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    ISTH and EAHAD Educational Partnership on Gene Therapy

    The Internationally Society on Thrombosis and Haemostasis (ISTH) and the European Association for Haemophilia and Allied Disorders (EAHAD) have announced an educational partnership to collaborate on components of the ISTH Gene Therapy in Hemophilia Education Initiative.

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    EAHAD co-signs bureaucracy in clinical trials statement

    The European Association for Haemophilia and Allied Disorders joined the European Hematology Association and other medical societies and patient advocates across disciplines to call for urgent action to make clinical trials less bureaucratic and more patient-centered, efficient and cheaper.

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    “Super-Six Challenge” online sessions by our Physio Committee

    Throughout the summer, members of our Physiotherapists Committee presented the “Super-Six Challenge for Haemophilia” focusing on the ankle, the knee, and the elbow, as part of the European Haemophilia Consortium's #thisway online campaign.

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    Our Nurses Committee is looking for a new member to join

    The EAHAD Nurse Committee currently has one vacant spot and is inviting nurses involved in haemophilia and bleeding disorders care to apply. The position is for a three-year term that would begin in February 2021.

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    EAHAD 2021 Virtual Congress Announcement

    After careful consideration, the EAHAD 2021 Organising Committee has decided to make the upcoming EAHAD 2021 Congress a fully virtual event, taking place from 3 until 5 February 2021.

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    EAHAD co-signs ISTH Covid-19 Consensus Statement

    Today, 15 July 2020, the European Association for Haemophilia and Allied Disorders together with 69 other thrombosis, haematology and patient safety organisations, published a Consensus Statement on the increased risk of deadly blood clots in Covid-19 patients.

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    2019 EAHAD Annual Report - Now available!

    The 2019 EAHAD Annual Report has just been published. In it, readers will find information on all EAHAD-related activities of the past year.

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    EAHAD - EHC Joint statement on AAV8-based ASPIRO clinical trial

    The European Association for Haemophilia and Allied Disorders (EAHAD) and European Haemophilia Consortium (EHC) have become aware of two deaths in patients with X-linked myotubular myopathy (XLMTM) on an AAV8-based gene therapy (AT132) in the phase 1/2 ASPIRO clinical trial conducted by Audentes, a subsidiary of Astellas. EHC and EAHAD are closely monitoring developments in this area due to this adeno-associated viral vector (AAV8) also being used in haemophilia gene therapy trials.

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    Covid-19 and psychosocial care: Recommendations and survey

    The Covid-19 pandemic has caused a multi-dimensional crisis: medical, psychological, economic, occupational, and educational and more. People with bleeding disorders have suffered anxiety and concern regarding the influence of Covid-19 on their condition as well as uncertainty as to whether their treatments will continue to be accessible during this pandemic.

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    EAHAD Webinar: Covid-19 and Haemophilia

    Hosted by Prof. Michael Makris and with three insightful presentations by Prof. Víctor Jiménez Yuste, Prof. Flora Peyvandi, and Prof. Cedric Hermans, the EAHAD Webinar on Covid-19 and Haemophilia (originally streamed on Tuesday 2 June 2020) is now available for everyone to watch.

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    Some words of farewell for Piet de Kleijn

    By Dr Sébastien Lobet, EAHAD Physiotherapists Committee past Chair
     
    Dear Piet,

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    Report from the 2020 HCPA Annual General Meeting

    By Paul McLaughlin, EAHAD Physiotherapists Committee Vice-Chair
     
    The 14th annual general meeting of the UK Haemophilia Chartered Physiotherapists Association (HCPA) was held on 5 and 6 March 2020.

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    EAHAD 2020 Physiotherapy Sessions - a recap

     
    On 4 February 2020 in The Hague, Netherlands, the Physiotherapists Committee welcomed colleagues from Europe and around the world to the EAHAD Multidisciplinary Pre-Congress Day physiotherapy sessions.

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    EAHAD - EHC Statement on Gene Therapies Hub-and-Spoke Model

    For the past three decades, haemophilia A and B have been treated using FVIII and FIX replacement concentrates, and their treatment and care has been managed through comprehensive or standard haemophilia treatment centres.

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    Sharing physiotherapy knowledge in Hungary

    By Marie Katzerova, EAHAD Central Europe Regional Coordinator, EAHAD Physiotherapists Committee member

     

    As the EAHAD Central Europe regional coordinator (Czech Republic, Hungary, Romania, Slovakia, Slovenia), I wanted to continue my journey through the countries of my region and, in November 2019, after Slovakia and Romania, I went to share my knowledge to Budapest, the beautiful capital of Hungary.

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    Interview with new EAHAD President, Prof. Flora Peyvandi

    On Thursday 6 February 2020, the EAHAD Annual General Meeting took place in The Hague, Netherlands. During the meeting, the EAHAD members voted and elected Professor Flora Peyvandi as the new president of our association. Prof. Peyvandi succeeded Prof. Michael Makris and will hold the position for the next two years (February 2020-February 2022).
     
    To get to know more about Prof. Peyvandi’s background, her vision and plans for EAHAD over the next two years, we asked her to answer a few questions.

     

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    EAHAD - EHC COVID-19 Joint Statement

    The European Association for Haemophilia and Allied Disorders and the European Haemophilia Consortium (EHC) published today a joint statement calling on the importance of home delivery of treatment during the COVID-19 pandemic so that patients avoid frequent hospital visits. The statement also highlights the importance of preparedness for any disruptions in the treatment supply chain.

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    Interview with Recognition Award recipient, Brian O'Mahony

    At the EAHAD 2020 Congress, in The Hague, Netherlands, we honoured professionals who have made exemplary contributions to the haemophilia and allied disorders community in Europe and around the world with the EAHAD Recognition Award for Outstanding Contribution to the Haemophilia and Allied Disorders field. One of the recipients is Mr Brian O’Mahony, Chief Executive Officer of the Irish Haemophilia Society. We took the opportunity to interview Mr O’Mahony on his background, his views on the current access to treatment for people with haemophilia, as well as the role of the patient haemophilia community in the age of new treatments.

     

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    Interview with Recognition Award recipient, Prof. Wolfgang Schramm

    At the EAHAD 2020 Congress, in The Hague, Netherlands, we honoured professionals who have made exemplary contributions to the haemophilia and allied disorders community in Europe and around the world with the EAHAD Recognition Award for Outstanding Contribution to the Haemophilia and Allied Disorders field. One of the recipients is Prof. Wolfgang Schramm, Emeritus Professor of Haemophilia at the Ludwig-Maximilians-University of Munich. We took the opportunity to interview Prof. Schramm on his accomplishments, his views on the current state of haemophilia care, as well as any advice he might have for aspiring professionals entering the bleeding disorders field.

     

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    EDUC8 Call for 8 Early Stage Researcher PhD fellowships

    The training network of the EDUCational Program on Factor VIII Immunogenicity (EDUC8) is looking for 8 early stage researchers for a total of 8 doctoral research projects across 8 institutes in Europe.

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    EAHAD-CFVD Working Group new publication and online survey

    By Emeritus Prof. Christopher Ludlam and Prof. John McVey, EAHAD-DB Coagulation Factor Variant Database Steering Group

     

    Last year the databases moved to new locations and we would urge all users to bookmark the new sites especially if they access them directly. The databases are available from the EAHAD Coagulation Factor Database home page (dbs.eahad.org) or directly using the links in the table below.

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    EAHAD 2020 - Testimonials from our members

    From 4 to 7 February, the EAHAD 2020 Congress took place in The Hague, Netherlands, with “A Golden Age of Treatment Choice” as its theme. More than 2300 delegates gathered at the World Forum for innovative discussions on the latest developments in the haemophilia and bleeding disorders field.

     

    We asked some prominent members of the EAHAD community to share their feedback on our 13th Annual Congress.

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    Interview with David Stephensen, new Physio Committee Chair

    This past February, Dr David Stephensen became the new Physiotherapists Committee Chair, taking over from Dr Sébastien Lobet. We recently had the opportunity to talk with Dr Stephensen and asked him among other things about his background, his motivation in helping establish the committee, his plans for the future, as well as the challenges associated with physiotherapy in haemophilia and bleeding disorders in Europe.

     

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    Interview with Mary Kavanagh, new Nurses Committee Chair

    This past February, Mary Kavanagh (Children’s Health Ireland hospital in Crumlin) became our new Nurses Committee Chair, taking over from Elsbeth Müller-Kägi. We recently had the opportunity to talk with Ms Kavanagh about her background, her plans for the future, as well as the challenges associated with nursing care in haemophilia and bleeding disorders in Europe.

     

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    Welcome to two new Nurses Committee members

    In December 2019, the EAHAD Nurses Committee launched a call for applications for two new members. After carefully looking into all applications, the Committee chose Linda Myrin Westesson, from Sweden, and Greta Mulders, from The Netherlands, to join the existing members of the group.

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    Press Release: EAHAD 2020 Congress

    From 4 to 7 February, the EAHAD 2020 Congress took place in The Hague, Netherlands. The theme of this year’s Congress was “A Golden Age of Treatment Choice” and, indeed, more than 2300 delegates experienced diverse sessions and presentations of the highest caliber. The 13th Annual Congress took place at the World Forum, under the direction of Congress President, Prof. Dr. Karin Fijn van Draat and was the place to be for innovative discussions on the latest developments in the haemophilia and bleeding disorders field.

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    In Memoriam - Axel Seuser, MD

    It is with profound grief that the European Association for Haemophilia and Allied Disorders informs that Axel Seuser, MD, passed away on Tuesday 4 February, during the EAHAD 2020 Congress in The Hague.

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    Report from the EHC Round Table on Pain Management in Haemophilia

    By Paul McLaughlin, EAHAD Physiotherapists Committee member, EAHAD Regional Coordinator (UK)

     

    Pain is a symptom of many disease processes and sometimes can be present even without a disease.

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    Report from the WCPT Congress 2019

    Several members of the EAHAD Physiotherapists Network attended and presented at the World Confederation for Physical Therapy (WCPT) Congress 2019, the profession’s leading global meeting in Geneva in May 2019. More than 5000 colleagues from 131 countries attended the 3-day congress to hear global perspectives showcasing the best in physiotherapy research and practice.

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    First meeting of the AFPH

    On Thursday 17 October in Paris, at the National Sports Institute, the first inter-professional meeting of the Francophone Association of Physiotherapists specializing in Bleeding Disorders (Association Francophone de Physiothérapeutes spécialisés dans les Maladies Hémorragiques - AFPH) took place. The inaugural AFPH event brought together 45 physiotherapists and doctors from Belgium, France and Switzerland, with the objective to promote and develop physiotherapy in the field of bleeding disorders, as well as to strengthen the network between the professionals.

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    EAHAD Gene Therapy Working Group launches

    EAHAD is pleased to announce the formation of a Working Group on Gene Therapy, following the approval of a proposal to the Executive Committee in September. Chaired by Prof. Dr Wolfgang Miesbach, the Working Group will have a mandate of two years and will be comprised of six to eight members. A patient representative will also be invited to take part.

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    Access the EAHAD Factor VII Gene (F7) Variant Database

    By Emeritus Prof. Christopher Ludlam and Prof. John McVey, EAHAD-DB Coagulation Factor Variant Database Steering Group

     

    The updated EAHAD Factor VII Gene (F7) Variant Database is now available at www.f7-db.eahad.org

     

    The database now includes 221 unique variants, representing gene variants identified in 728 individuals.

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    EAHAD 2020: Just 2 months away!

    EAHAD 2020 is taking place from 4-7 February under the direction of Congress President, Prof. Dr. Karin Fijn van Draat. The theme of this year’s Congress is “A Golden Age of Treatment Choice”.

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    Interview with Prof. Dr. Karin Fijn van draat, EAHAD 2020 President

    Prof. Dr. Karin Fijn van Draat is not only a member of the EAHAD Executive Committee, but also the President of our 2020 Congress taking place from 5 to 7 February 2020 in The Hague, Netherlands. In the lead up to our 13th annual meeting, we had the opportunity to speak with Prof. Fijn van Draat about her background, the most rewarding and challenging aspects of being this year’s Congress President, as well as her views on what the future key issues will be in the haemophilia and allied disorders field in Europe.

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    The EAHAD Psychosocial Group looks for a social worker to join

    The EAHAD Psychosocial Professionals Working Group currently has one vacant spot and is inviting social workers involved in haemophilia and bleeding disorders care to apply. The position is for a three-year term that would begin in 2020.

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    EAHAD Executive Committee: Call for Nominations

    EAHAD is inviting its members to apply for 4 vacant spots on its Executive Committee.

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    2020 EAHAD membership - Join us!

    The 2020 EAHAD membership cycle has just been launched! Benefits for new and returning members range from reduced registration fees for the EAHAD 2020 Congress; a one-year subscription to Haemophilia Journal, combining online access and six issues sent by post; regular updates on EAHAD activities and initiatives, including three annual issues of our newsletter; as well as eligibility to join our committees and vote at the Annual General Meeting.

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    Visiting Manchester Central, EAHAD 2021 Congress venue

    On 19 September, EAHAD representatives were in Manchester, UK, host city for our 2021 Congress. The delegation included EAHAD President, Prof Mike Makris, who will serve as Congress President for EAHAD 2021.

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    EAHAD's Psychosocial Group looks into the future of psychosocial care

    Continuing their pursuit of building a community of psychologists and social workers involved in the bleeding disorders field in Europe, the EAHAD Psychosocial Professionals Working Group will dedicate the third and final part of their EAHAD 2020 Pre-Congress Day Programme to a brainstorming session on building a network of European peers and colleagues.

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    Save the date! – EAHAD 2020 in The Hague from 5-7 February

    The EAHAD 2020 Annual Congress will take place in The Hague, Netherlands, from 5 to 7 February 2020 at the World Forum congress centre.

     

    Congress President Prof. Karin Fijn van Draat, with the support of the Congress Organising Committee, has put together an insightful programme, full of interesting sessions on the most pressing issues in haemophilia and bleeding disorders care today. With the theme “A Golden Age for Treatment Choice”, the programme pays homage to Dutch history and the legacy of 17th century art on display in The Hague, while highlighting the exciting period we find ourselves in in terms of haemophilia treatment and the many considerations that clinicians and patients must take into account.

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    The EAHAD Coagulation Factor Databases – now at a new location

    By Christopher Ludlam, Chairman, and Geoffrey Kemball-Cook, Secretary, EAHAD-DB Coagulation Factor Variant Database Steering Group

     

    The EAHAD Coagulation Factor Databases have recently been enhanced with new features and a greatly increased number of listed variants. The databases are now hosted at a new address http://dbs.eahad.org and you are encouraged to visit the site and review the variant lists, clinical information, and a host of additional information about the individual clotting factors, including comprehensive references and graphic display on molecular models of the site of variants.

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    Welcome to the two new PT Committee members

    In April 2019, the EAHAD Physiotherapists Committee launched a call for applications for two new members. The number and quality of the applications received was high and, after careful consideration, the Committee chose Magnus Aspdahl, from Sweden, and Nathalie Grinda, from France, to join the existing members of the group.

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    In memory of Jørgen Ingerslev (1942 - 2019)

    We were saddened to hear of the passing of Professor Jørgen Ingerslev earlier this month.

     

    Prof. Ingerslev was a world leading specialist in the haemophilia and bleeding disorders field. Recognised for his knowledge and dedication to his profession, he had an extensive output of research publications and was a frequent speaker at conferences and symposia around the world.

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    EHC’s 1st Conference on Women and Bleeding Disorders - a recap

    The European Haemophilia Consortium’s (EHC) inaugural Conference on Women and Bleeding Disorders took place in Frankfurt, Germany, from Friday 24 to Sunday 26 May. It brought together close to 150 delegates, including patient representatives from around 30 countries.

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    2020 Research Grant cycle now open

    The 2020 EAHAD Research Grant call for applications is now open. The application cycle runs from July to October of each year and the winner is announced at the annual EAHAD Congress in February.

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    EUHASS – Now accessible via the EAHAD website

    EUHASS is a pharmacovigilance programme monitoring the safety of treatments for people with inherited bleeding disorders in Europe. Haemophilia treatment centres report adverse events directly to the EUHASS website where a live tally of reported events can be viewed. Quarterly and yearly surveillance reports are produced and made available to participating centres and product manufacturers, whilst product-specific reports are only shared with regulators and product manufacturers.

     

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    EAHAD moves its legal base from the UK to Belgium

    Following a unanimous decision on Thursday 7 February 2019 at the Annual General Meeting, EAHAD officially transferred its legal base from the United Kingdom to Belgium. Therefore, EAHAD is now an international non-profit association (AISBL) under Belgian law.

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    Interview with Recognition Award recipient, Prof Edward Tuddenham

    At the EAHAD 2019 Congress, in Prague, Czech Republic, we honoured two professionals for their work for and service to the haemophilia and allied disorders community in Europe and around the world, with the EAHAD Recognition Award for Outstanding Contribution to the Haemophilia and Allied Disorders field. One of the two recipients is Prof Edward Tuddenham, leading haematologist from the Royal Free Hospital in London. We took the opportunity to interview Prof Tuddenham on his beginnings, his thoughts on the shape of the haemophilia field today, as well as his future plans.

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    Interview with Recognition Award recipient, Mr Piet de Kleijn

    At the EAHAD 2019 Congress, in Prague, Czech Republic, we honoured two professionals for their work for and service to the haemophilia and allied disorders community in Europe and around the world, with the EAHAD Recognition Award for Outstanding Contribution to the Haemophilia and Allied Disorders field. One of the two recipients is physiotherapist Mr Piet de Kleijn, a current member and past chair of the EAHAD Physiotherapists Committee. We took the opportunity to interview him on his beginnings, his thoughts on the shape of the haemophilia field today, and his future plans.
     

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    Awards given for top Poster & Oral Abstracts at EAHAD 2019

    At the EAHAD 2019 Congress, in Prague, Czech Republic we had the great opportunity to honour contributions made to the field of bleeding disorders. On the final day of the meeting, Friday 8 February, awards were given out to the top poster and oral abstract presentations.

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    EAHAD Physiotherapists Committee survey published in Haemophilia

    In March 2019, “Scope of practice of haemophilia physiotherapists: A European survey” was published in Haemophilia. Developed by the EAHAD Physiotherapists Committee in 2018, the web‐based survey was conducted with the aim to quantify the role and scope of practice of physiotherapists involved in haemophilia care. It included questions concerning work practices, assessment and treatment activities, and level of autonomy.

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    EAHAD Women and Bleeding Disorders Working Group hold first official meeting

    On February 6, during the EAHAD 2019 Congress, in Prague, Czech Republic, the inaugural meeting of the EAHAD Women and Bleeding Disorders Working Group took place. After its establishment in September and a teleconference in November 2018, this meeting was the first time the members of the Working Group had the opportunity to meet in person, discuss, plans, and finetune the priorities for the year ahead.

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    A warm welcome to two new Nurses Committee members

    In August 2018, the EAHAD Nurses Committee launched a call for applications for two new members. After careful consideration, Simon Fletcher, from the United Kingdom, and Nanda Uitslager, from the Netherlands were selected to join the six-member group. We are delighted to welcome Simon and Nanda, who officially joined the committee this February on the occasion of the EAHAD 2019 Annual Congress. We are positive that their experience and knowledge will critically contribute to the future quality of work of the Nurses Committee. You can read more about Simon’s and Nanda’s respective backgrounds by clicking the links below.

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    2019 EAHAD Research Grants recipients announced

    The objective of the EAHAD Research Grants is to foster pre-clinical and clinical research collaborations in Europe and to support scientific projects aimed at improving the care of patients with inherited and acquired bleeding disorders.

     

    For the 2019 cycle, we received 16 applications of great quality and scientific interest from 11 European countries. These were reviewed by a committee and by subject matter experts. Following the final decision, two 2019 Research Grants recipients were announced during the last day of the EAHAD 2019 Congress. They are:

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    12th Annual EAHAD Congress, Prague, Czech Republic – A recap

    From 5 to 8 February, the EAHAD 2019 Congress took place in Prague, Czech Republic. Prague, the city in the heart of Europe, welcomed more than 2600 delegates from over 80 countries for an unforgettable scientific experience. The 12th Annual Congress took place at the Prague Congress Centre, with a beautiful view over the historic city, and was the place to be for discussions on the latest treatment developments and ongoing clinical challenges in managing haemophilia and other related bleeding disorders.

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    Call for Applications: EAHAD Physiotherapists Committee

    EAHAD is inviting haemophilia physiotherapists to apply for two vacant posts on its Physiotherapists Committee. The positions are for a three-year term that would begin in February 2020.

     

    Physiotherapists Committee membership offers an opportunity to contribute to the development and implementation of physiotherapy and inter-professional EAHAD projects and events, including the Multidisciplinary Pre-Congress Day.

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    Press Release: EAHAD 2019 Congress

    EAHAD 2019 Congress - Insightful discussions in the City of a Hundred Spires

     

    Prague, Czech Republic – 14 February 2019 – Prague, Czech Republic, the city in the heart of Europe, welcomed more than 2600 delegates from over 80 countries to the unforgettable scientific experience that is the Congress of the European Association for Haemophilia and Allied Disorders (EAHAD). For its 12th iteration, the meeting took place at the Prague Congress Centre, featuring beautiful views over the historic city, and presented the ideal backdrop for discussions on the latest treatment developments and ongoing clinical challenges in managing haemophilia and other related bleeding disorders.

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    European Principles of Inhibitor Management: now in video format

    We are pleased to inform you that the European Principles of Inhibitor Management are now available in video format. This production is the result of two years’ worth of collaboration between multidisciplinary care professionals from the EAHAD and EHC networks, including haematologists, physiotherapists, nurses and psychosocial professionals.

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    EAHAD introduces Working Group on Women and Bleeding Disorders

    EAHAD is pleased to announce the formation of a Working Group on Women and Bleeding Disorders, following the approval of a proposal to the Executive Committee in September. The Working Group’s mandate will last two years with its official first meeting set to take place during the 2019 EAHAD Congress in Prague.

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    EAHAD Psychosocial Working Group launches

    EAHAD is delighted to announce the launch of a Working Group for Psychosocial Professionals, following the approval of a proposal to the Executive Committee in September.

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    EUHASS newest Annual Report published

    EUHASS is an adverse event reporting system for European patients with inherited bleeding disorders carrying out on-going surveillance since October 2008. This November, the 9th Annual Report was published including data from the project start date up to 31 December 2017.

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    European Haemophilia Consortium 2018 Conference - A recap

    From 5 to 7 October 2018, EAHAD attended the 31st European Haemophilia Consortium Conference. Taking place in Brussels, the 2018 EHC conference was co-hosted by the Society of Patients with Haemophilia in Azerbaijan and offered a programme full of interesting and comprehensive sessions, that touched on many aspects of importance to the haemophilia community. In fact, the meeting already started a day early with a bike ride from Leuven to Brussels that helped raise awareness and promote the importance of physical activity.

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    Young Investigators Workshop at EAHAD 2019

    We are excited to announce that our 2019 Congress will feature an interactive half-day workshop for Young Investigators on 5 February on the topics of:

     

    1. Finding the answer to your question – a workshop on study design
    2. How to write and publish your research

     

    Research projects have the aim to answer questions that are vital for medical progress. To perform a successful research project, it is essential to formulate the right research question and to use the right design for the study. Once the study is completed, it is paramount to share your results by getting them published.

     

    The aim of this Young Investigator Workshop is to teach clinical and translational researchers:

     

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    Interview with Dr Jan Blatny, EAHAD 2019 Congress President

    Dr Jan Blatny is not only a member of the EAHAD Executive Committee, but also the President of the EAHAD 2019 Congress in Prague, taking place from 6 to 8 February 2019. In the lead up to the Prague meeting, we had the opportunity to talk with Dr Blatny. We asked him among other things to shed some light on his background, the highlights and challenges associated with his work as Congress President, as well as his perspective on the future of haemophilia and allied disorders in Europe.
     

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    Call for Applications: EAHAD Nurses Committee

    EAHAD is inviting haemophilia nurses to apply for two vacant posts on its Nurses Committee.

     

    To apply to join the Nurses Committee, please send a short letter of motivation (maximum 300 words) outlining why you wish to be a part of the committee. Please also include in the letter the following information:

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    mAPPHemo: A pharmacovigilance system for haemophilia products

    The Angelo Bianchi Bonomi Haemophilia and Thrombosis Centre, under the direction of Prof Flora Peyvandi, developed an interactive online registry, accessible to doctors and patients through a free smartphone app and web portal. Called mAPPHemo, the application allows for data collection on post-marketing surveillance of new haemophilia drugs.

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    An update on the EAHAD Databases of Clotting Factor Variants

    By Christopher Ludlam, Chairman, Steering Group

     

    The EAHAD databases of genetic variants in clotting factors VII, VIII, IX and VWF continue to be very popular with clinicians and researchers from around the world. Our curators strive to keep the records up to date and to provide detailed, additional clinical information about, for example, the presence of inhibitors. The provision of molecular models revealing the site of variation is particularly useful, as demonstrated in the figure below.

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    New EAHAD Membership website – Providing answers to your questions

    Are you a member of the EAHAD community? If yes, then you need to check out the newly launched EAHAD Membership website. By logging in with your individual username and password, you will have at your fingertips answers to all your questions like:

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    Prof Cedric Hermans appointed new Editor-in-Chief of Haemophilia

    This week, Wiley appointed Prof Cedric Hermans as the new Editor-in-Chief, of Haemophilia, the official journal of EAHAD. Prof Hermans, EAHAD’s Past-President, replaces Prof Michael Makris and Dr Craig Kessler, who step down from their editorial posts this month and at the end of the year, respectively.

     

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    EAHAD-EHC Joint Statement on novel non-replacement therapies

    For the past three decades, haemophilia A and B patients have been treated using FVIII and FIX replacement concentrates. These therapies are well known to clinicians and patients.

     

    A promising new era has now begun in the treatment of haemophilia and rare bleeding disorders. A series of novel, non-replacement therapies are becoming available, which may significantly impact the clinical care and quality of life of patients. The European Association for Haemophilia and Allied Disorders (EAHAD) and the European Haemophilia Consortium (EHC) welcome all novel therapies that have a meaningful impact on patients' treatment, care and quality of life.

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    EAHAD at “Women and Bleeding Disorders” EHC Round Table

    On 19 June, EAHAD participated in the Round Table of Stakeholders on “Women and Bleeding Disorders”. Organised by the European Haemophilia Consortium (EHC), the event took place in the European Parliament in Brussels. Members of the European Parliament from different political groups also participated in the event, with Jana Žitňanská, MEP, chairing the Round Table.

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    Warm welcome to two new EAHAD colleagues, Livia and Angelos

    A main goal of EAHAD going into the future is increasing its employee base in order to provide a better service to our members. Towards this goal, two new staff joined the EAHAD team this year. In April, Livia Boagiu was hired as EUHASS Project Manager and in June Angelos Athanasopoulos took on the role of Communications and Events Officer.

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    Interview with Sébastien Lobet, new Physio Committee Chair

    In February, Dr Sébastien Lobet became the new Physiotherapists Committee Chair, taking over from Mr Piet de Kleijn. At the EAHAD Congress in Madrid, Spain, we sat down with Dr Lobet and asked him to shed some light on his background, the highlights and challenges associated with his work, and his ambitions for the committee and for physiotherapy for bleeding disorders in Europe.

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    Interview with Elsbeth Müller-Kägi, new Nurses Committee Chair

    In February, Martin Bedford handed over the reins of the EAHAD Nurses Committee to Elsbeth Müller-Kägi, who will serve as chair for the next two years. By way of introduction, we asked Ms Müller-Kägi a few questions to get an idea of the joys and challenges associated with her work as well as her experience as a haemophilia nurse, both in her country and on the European level.

     

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    Interview with Professor Mike Makris, EAHAD’s new president

    On 8 February 2018, the EAHAD Annual General Meeting took place in Madrid, Spain. Among other important matters that were discussed, the members voted and elected Professor Mike Makris as the association’s new president. Professor Makris succeeded Professor Cedric Hermans and will hold the position for the next two years (February 2018-January 2020).

     

    To get some insight into Mike’s background as well as his vision and plans for EAHAD over the term of his presidency, we asked him to answer a few questions.

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    11th Annual EAHAD Congress, Madrid, Spain – a recap

    With 2076 participants from 74 countries in attendance, the 11th Annual Congress of EAHAD took place in Madrid, Spain, from 6 to 9 February 2018. Dr Víctor Jiménez Yuste served as president of the Congress, which brought together multidisciplinary bleeding disorders stakeholders from across Europe and beyond.

     

    The event kicked off with the 2nd edition of the Pre-Congress Day, on 6 February featuring simultaneous translation into Spanish and dedicated sessions for physiotherapists, nurses and psychosocial professionals. On the same day, EAHAD launched a new initiative, the inaugural Young Investigators Workshop. The reception for the Workshop was very positive and you can read testimonials from the participants here.

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    Testimonials from Young Investigators Workshop

    On 6 February 2018 on the margins of our 2018 Congress,  EAHAD organised  its first-ever Young Investigators Workshop. The theme of the half-day workshop was "Finding the answer to your question - a workshop on study design".

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    Become a member of EAHAD or renew your membership

    We are pleased to announce the launch of a new EAHAD membership website.

     

    The new site allows you to easily access the Congress registration platform and benefit from reduced fees for members. It also provides quick links to the most relevant information for members including funding opportunities, upcoming events, and publications.

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    Job Posting: EUHASS Project Manager

    We are very pleased to announce that EAHAD is expanding its team in 2018. We are looking to recruit a Project Manager to oversee EUHASS, a pharmacovigilance program to monitor the safety of treatments for people with inherited bleeding disorders in Europe. The ideal candidate will have experience working in a health-related research environment and will be a self-starter with excellent organisational skills.

     

    The deadline to apply is 14 January 2018 at 23:59 CET.

     

    Full details can be found here: https://eahad.org/vacancies/

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    2016 Annual Report now available for download

    The 2016 Annual Report is now available to consult and download.

     

    It includes statistics from our 9th Congress, which took place in Malmö, Sweden; a look at what was achieved by our committees and working parties; an update on European haemophilia centre certifications; as well as information on our funding and governance structure.

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    Young Investigators Workshop at EAHAD 2018

    *Deadline extended to 10 January 2018*

     

    EAHAD is excited to announce that our 2018 Congress will feature a half-day workshop for Young Investigators on 6 February on the topic of:

    Finding the answer to your question – a workshop on study design

    Research projects have the aim to answer questions that are essential for medical progress. To perform a successful research project, it is essential to formulate the right research question and to use the right design for the study.

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    Q&A with Prof Hervé Chambost, Executive Committee member

     

    At the 2017 EAHAD Annual General Meeting held in February in Paris, France, Professor Hervé Chambost was elected to the association’s Executive Committee. We took the opportunity to ask him a few questions to get to know him better and find out what motivated him to become involved.

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    Call for Nominations: EAHAD Executive Committee

    EAHAD is calling for nominations for Executive Committee members to serve a 3-year term from February 2018-February 2021. There are 4 vacant positions.

     

    To apply to join the Executive Committee, please complete the Nomination Form.

     

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    Travel Grants to EAHAD 2018

    EAHAD will be awarding travel grants to junior physicians and scientists (35 years old or younger), PhD students, post-doctoral researchers, nurses, physiotherapists, and other allied healthcare professionals wishing to attend the EAHAD 2018 Congress taking place in Madrid, Spain from 7-9 February.

     

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    EAHAD-DB F7 Variant Database now available

    by Christopher Ludlam, Chairman, EAHAD-DB Coagulation Factor Variant Database Steering Group*

     

    The EAHAD-DB F7 Variant Database is now up on the web and is available.

     

    This has been a major project for the EAHAD-DB Steering Group as the level of complexity is much greater than for variants in the F8 and F9 genes which result in haemophilia A and B. This is partly because there are two F7 genes per cell (being an autosomal disorder) and also because factor VII plasma levels are associated with some common polymorphisms.

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    2017 Research Grant Recipients

    EAHAD is proud to award research grants to support scientific projects aimed at improving the care of people with inherited bleeding disorders. The grant competition is open to all scientists and healthcare providers working in the field of inherited bleeding disorders in Europe and undertaking pre-clinical or clinical research. The grants of up to €50,000 each are for projects lasting up to three years.

     

    For this inaugural competition, EAHAD received 23 applications from 11 countries.

     

    The two recipients for 2017, first announced during the EAHAD 2017 Congress, are:

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    Call for Applicants: EAHAD Nurses Committee

    EAHAD is inviting haemophilia nurses to apply for one vacant spot on its Nurses Committee.

     

    To apply to join the Nurses Committee, please send a short letter of motivation (maximum 300 words) outlining why you wish to be a part of the committee. Please also include in the letter the following information:

    Full name

    Haemophilia Treatment Centre you are affiliated with

    Number of years working with people with bleeding disorders

    Whether you work with children, adults, or both

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    Connect with EAHAD on Social Media

    Stay in touch with the latest news on EAHAD events and opportunities by following our Social Media accounts.

     

     

     

    Follow us on Twitter: @EAHADnews

     

     

     

     

    Follow us on LinkedIn

     

     

     

     

    We also encourage you to engage with us through these platforms, for example by using the hashtag #EAHAD2017 on any social media posts you make about our upcoming congress.

     

     

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    Notice to members: Next EAHAD AGM on 2 February 2017

    The Annual General Meeting (AGM) of EAHAD will take place during the EAHAD 2017 Congress in Paris, France.
    The meeting will be held on Thursday, February 2 from 13:15-13:45 PM in the main plenary room of the Paris Marriott Rive Gauche Hotel and Conference Centre.

     

    An agenda and other meeting documents are now available in the Members' Section of the website and have been circulated by email to all current members.

     

    If you have not yet renewed your membership for 2016-17, you can do so here: https://eahad.org/membership/

     

    For more information on the EAHAD 2017 Congress, please visit: http://eahad2017.com/

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    EuroBloodNet approved as a European Reference Network

    On 15 December 2016, the European Reference Network (ERN) Board of Member States voted to approve the EuroBloodNet ERN along with 22 other rare disease ERNs. EuroBloodNet encompasses rare haematological diseases, including haemophilia and other inherited bleeding disorders.

     

    European Reference Networks, an initiative of the European Commission, are networks of healthcare professionals and centres of expertise aimed at improving quality, safety, and access to  highly specialised healthcare in Europe.

     

    For more information on ERNs and the approval process, please visit:  http://ec.europa.eu/health/ern/implementation/call_en

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    Renew your EAHAD membership or become a member

    The new EAHAD Membership cycle for 2016/17 began on 1 November 2016. If you have not done so already, we would like to remind you to please renew your membership to EAHAD. If you are not yet a member, we encourage you to join.

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    Register for the Pre-congress Day for Nurses and Physiotherapists

    EAHAD is keen to develop interactions between all members of the multidisciplinary team involved in care of patients with haemophilia.

     

    For several years now, the Executive Committee of EAHAD has included the chair of the EAHAD Nurses Committee as an ex-officio representative, and this has been followed last year with the addition of the chair of the newly formed EAHAD Physiotherapists Committee.

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    Call for Nominations: EAHAD Executive Committee Members

    *** Deadline extended to: 30 November 2016 ***

     

    EAHAD is inviting its members to apply for two vacant spots on its Executive Committee.

     

    To apply to join the Executive Committee, please download and complete the nomination form.

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    Travel Grants to EAHAD 2017: Apply by 1 December

    Travel grants are available to junior physicians and scientists (35 years old or younger), PhD students, post-doctoral researchers, nurses, physiotherapists, and other allied healthcare professionals wishing to attend the EAHAD 2017 Congress taking place in Paris, France from 1-3 February.

     

    The grants cover the registration fee and travel and accommodation expenses to attend the congress up to an amount of 1500 EUR. The award will be presented on-site at the congress. The award recipient must come in person to receive her/his grant (at the speakers’ desk, from 12:30 on Friday, 3 February 2017). No payment will be made before or after the Congress.

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    Multidisciplinary Baltic Haemophilia Workshop held in Helsinki

    On 7 June, EAHAD in collaboration with the Helsinki University Central Hospital Coagulation Disorders Unit and with support from the World Federation of Hemophilia (WFH) Twinning Program, held a day-long multidisciplinary update meeting on for haemophilia healthcare professionals from the Baltic region. Thirty-eight participants attended the meeting including members of the multidisciplinary teams from nine centres treating bleeding disorders patients in Estonia, Finland, and Lithuania.

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    EAHAD and EHC share expertise at summer camp in Estonia

    by Marie Katzerová, member of the EAHAD Physiotherapists Committee and physiotherapist from Czech Republic

     

    At the beginning of August, around 50 people with haemophilia, their families, and healthcare professionals from Estonia gathered for a four-day summer camp in Värska, Estonia. Along with Prof Paul Giangrande (EHC) and Dr Klaus Ӧsterholm (Helsinki, Finland), I was invited to join in the summer camp to deliver educational sessions for the participants.

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    Update on the Prospective Rare Bleeding Disorders Database (PRO-RBDD)

    The prospective Rare Bleeding Disorders Database (PRO-RBDD) is continuing to collect data on patients with fibrinogen and factor XIII (FXIII) deficiencies using a prospective observational cohort design.

     

    Recently the results of the analysis of patients with FXIII deficiency were presented at the Annual meeting of International Society of Thrombosis and Haemostasis-SSC held in Montpellier in May 2016. Results on 64 patients showed that FXIII coagulant activity is correlated with clinical severity defined as age at first bleeding, age at diagnosis and severity of bleeding history. In addition, the minimum hemostatic FXIII level that should be achieved to prevent spontaneous major bleeding was also reported.

     

    Moreover, both yearly bleeding incidence and cumulative incidence was reduced in patients on prophylaxis compared with patients on on-demand therapy observed for a median follow up period of 528 days (IQR: 790-185). This allows us to strongly recommend prophylaxis in patients with FXIII deficiency to prevent bleeding episodes.

     

    The second part of the project is focused on Fibrinogen deficiency and results on the prospective evaluation of 96 patients has been recently submitted to the upcoming America Society of Hematology congress.

     

    Finally two external quality control assessment exercises of laboratory assays for fibrinogen and FXIII were also carried out. Results were shown during the Annual Congress of International Society of Thrombosis and Haemostasis held in Amsterdam in June 2013 and have been recently submitted for publication.

     

    We invite new partners to join the project in order to enlarge our study populations on both Fibrinogen and FXIII deficiencies and to fulfil all gaps in the management of these two coagulation disorders.

     

    For more information on how to join the project, you can visit the website http://eu.rbdd.org.

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    A Window into the Causes of Haemophilia and VWD

    The EAHAD genetic variant database is designed for clinicians and scientists and is the most comprehensive global source of known causative mutations for haemophilia A and B and VWD. It is easy to access at www.eahad-db.org and provides a wealth of clinical and scientific information about the relevant genes. The ‘In Depth Mutation Analysis’ of each variant reveals the features of each mutation and predicts its consequences – included is a pictorial representation of a missense mutation site on the factor VIII molecule. It enables you to see how the mutation may produce its clinical phenotype. For those wishing to know more about evolutionary phylogeny of the genes there are displays of gene sequences from many animals ranging from zebrafish and chickens to gorillas!

     

    Also available is a factor VII database at the same web address. A much enhanced version is at the final stages of development and we hope it will be available later this year. As there are two factor VII gene copies per cell, and because there are several polymorphisms associated with altered levels of plasma factor VII concentration, this has been a much more complex development than that for haemophilia A or B!

     

    The arrangements for establishment of factors X and XI variant databases are on track and we are exploring the possibility of embarking on development of a fibrinogen database.

     

    Please visit www.eahad-db.org and see how user-friendly the site is. We welcome feedback.

     

    Chairman, Steering Group Christopher Ludlam (cal@ludlam.org.uk) and Secretary, Geoffrey Kemball-Cook (geoffrey@kemball-cook.co.uk).

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    Letter from the Presidents: No Brexit for EAHAD and the EHC

    Last Friday, 24 June, following the referendum and the decision of a majority of citizens from the United Kingdom (UK) to leave the European Union (EU), we woke up in a different Europe that we neither expected nor hoped for. Besides the political, diplomatic, and economic consequences, the Brexit will have major implications for health care and medical research. These consequences were likely underestimated or even fully ignored by those who voted to leave the EU. This is certainly true for rare diseases such as haemophilia and it is imperative that decision makers now act responsibly to maintain the important developments that Europe has brought to the lives of patients. We would like to assure the rare bleeding disorder community including patients and healthcare professionals from across the EU and the UK that the European Association for Haemophilia and Allied Disorders (EAHAD) and the European Haemophilia Consortium (EHC) remain committed to adequately representing them, improving patients’ lives, and furthering scientific and medical research.

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