News

Home / News

    EAHAD Gene Therapy Webinar: Recording available!

    On Tuesday 15 November at 16.00, we hosted the last Gene Therapy webinar on the Hub and Spoke Model: Practical Experiences from Europe. The webinar was chaired by Flora Peyvandi, EAHAD Past President, and Declan Noone, EHC - European Haemophilia Consortium President, with an introduction by Prof. Wolfgang Miesbach and presentations by 3 experts in our community from Turkey, France, and Denmark.

    Missed our last webinar? You can watch the full recording of the webinar and the presentation slides on our Youtube channel. Click here to watch the recording!

    AGENDA

    1. Introduction: Wolfgang Miesbach (10 minutes)

    2. Speakers
    - Experience from Turkey: Bulent Zulfikar (10 minutes)
    - Experience from France: Yesim Dargaud (10 minutes)
    - Experience from Denmark: Peter Kampmann (10 minutes)

    3. Panel Discussion: moderated by Flora Peyvandi and Declan Noone (25 minutes)

    4. Q&A (5 minutes)

    Keep an eye out for the next Gene Therapy webinar!

    Click here to see the full post

    The Social Media Ambassadors Programme is back at EAHAD2023!

    The Social Media Ambassador Programme aims to enhance EAHAD’s mission of ensuring the provision of the highest quality of clinical care, educating the medical community and the general public, and promoting scientific research in the field of haemophilia and allied disorders.

    Mission & Goals

    As Social Media Ambassador, you will be responsible for helping to promote the Congress before the meeting, as well as helping generate interest and engagement during the event. You will positively and consistently represent EAHAD by sharing or creating content and engaging on social media and in their networks.

    INCREASING SOCIAL MEDIA PRESENCE AND BUILDING BRAND AWARENESS: Reach and engagement rate are both amplified with every ambassador we will add to our program.

    GENERATING MORE USER-GENERATED CONTENT: Incentivising ambassadors to post and share their content is seen as more authentic.

    RECEIVING MORE FEEDBACK: Ambassadors can get valuable feedback since they open the lines of communication with users.

    Become an ambassador: Benefits

    • Increase connection and exposure to the haemophilia network
    • Certificate of participation at the 2023 Social Media Ambassadors Programme
    • Possibility to attend the networking evening on Thursday 9 February 2023

    What will the ambassador do

    PRIOR THE CONGRESS

    • Welcome post
    • 1 weekly repost on LinkedIn and Twitter using the official hashtags
    • 1 weekly post with original content about the Congress using the official hashtags
    • Interact (Like/Comment/Tag) with at least 2 posts from the EAHAD official accounts (LinkedIn and Twitter)

    1 WEEK BEFORE

    • 3 reposts on LinkedIn and Twitter using the official hashtags
    • 2 posts with original content on the Congress using the official hashtags
    • Interact (Like/Comment/Tag) with at least 3 posts from the EAHAD official accounts (LinkedIn and Twitter)

    DURING THE CONGRESS

    • At least 3 posts with original content on the sessions using the official hashtags
    • 1 photo of the session of your choice
    • 1 post at the end of the Congress with your thoughts and remarks

    Official Social Media Channels & Hashtags

    LinkedIn and Twitter

    The Official Hashtags are: #EAHAD2023 #EAHADCONGRESS

    Click here to see the full post

    Travel Grants for EAHAD 2023 Congress are now available!

    Travel grants are available to junior physicians and scientists (35 years old or younger), PhD students, post-doctoral researchers, nurses, physiotherapists, psychosocial professionals and other allied healthcare professionals wishing to attend the EAHAD 2023 Congress taking place in Manchester, UK, from 7-10 February 2023.

    Travel grants are available to both European and international participants.

    The grants cover the registration fee and travel and accommodation expenses to attend the congress up to a maximum amount of 1300 GBP.

    Smaller grants of up to 650 GBP are available for allied health professionals who wish only to attend the Allied Health Professionals Day on 7 February.

    Eligibility criteria:

    Travel Grant applicants should: 

    - Be working in haemophilia-related services

    - Be actively interested in haemophilia and allied disorders

    - Have submitted an abstract for oral or poster presentation (preferred)

    - Have not been awarded a travel grant to attend an EAHAD Congress previously 

    What is covered:

    Travel grants go towards covering registration, travel, and accommodation expenses to attend the congress (based on actual costs and receipts) up to a maximum amount of 1300 GBP.

    Recipients must register themselves for the congress and make their own arrangements for travel and accommodation.

    Conditions:

    The grant will be awarded on-site during the congress and the recipient must come in person to the Speakers’ Desk to receive their grant. No payment will be made before or after the Congress.

    How to apply:

    To apply for a travel grant, please complete the application form

    Your application must include a short letter of motivation (150-300 words) letting us know why you are applying and outlining what you are hoping to gain from participating in the EAHAD 2023 Congress.

    If you have submitted an abstract, please list the abstract number(s) in your application form.

    The deadline for applications is 14 November 2022 at 23:59 CET. 

    Selection process:

    The EAHAD 2023 Organising Committee will select the travel grant recipients. Travel grants are awarded on the basis of abstract submission, application quality, and financial need.

    All applicants will be informed of the decision by end-November 2022.

    The names of selected applicants may be published on www.eahad.org or in other EAHAD publications.

    Click here to see the full post

    Call for Applications: Women and Bleeding Disorder Working Group

    Are you a healthcare professional working with and treating Women with Bleeding Disorders? EAHAD is looking for a member to join its Women and Bleeding Disorders Working Group!

    The WG aims to:
    - gather, concentrate and disseminate knowledge among European healthcare providers on the diagnosis and treatment of women-specific bleeding symptoms in inherited bleeding disorders
    - define research priorities within the European medical society regarding women with inherited bleeding disorders
    - diminish misdiagnosis and under-treatment of women with bleeding disorders in Europe

    Visit our Job Opportunity webpage to apply!

    Click here to see the full post

    EAHAD Gene Therapy AHP Webinar: Recording available!

    On Wednesday 15 June, 16.00-17.00 CEST, we hosted a webinar on the role of the different haemophilia team members in Gene Therapy.

    Click here to see the full post

    Interview with Nanda Uitslager, new Nurses Committee Chair

    This past February, Nanda Uitslager became the new Nurses Committee Chair, taking over from Mary Kavanagh. We recently had the opportunity to talk with our new Committee Chair and asked her among other things about her background, her plans for the future, as well as the challenges associated with nursing in haemophilia and bleeding disorders in Europe.

    Click here to see the full post

    EAHAD E-Learning Working Group formed

    We are delighted to announce that in March 2022, a new EAHAD Working Group was formed and had its first meeting. Our E-Learning Working Group will strive to contribute to the training of young physicians and offer a high quality continuous education programme to experienced haematologists and pathologists, who manage patients with bleeding disorders, by producing a variety of online educational materials and items.

    Click here to see the full post

    EAHAD Hub and Spoke Model Webinar - Now Available!

    On Wednesday 30 March, 14.00-15.00 CET, we hosted a Gene Therapy webinar on the Hub and Spoke Model.
     
    Chaired by Prof. Wolfgang Miesbach and with presentations by four experts in our community, it was a not-to-be-missed event.
     
    Programme
     
    - "Short overview about gene therapy in haemophilia", Dan Hart, UK
    - "Patient selection and eligibility criteria", Robert Klamroth, Germany
    - "The journey of gene therapy, patient’s view", Declan Noone, Ireland
    - "The journey of gene therapy, physician’s view", Flora Peyvandi, Italy
     
    You can watch the full recording below.
     
    https://youtu.be/lopMxC7Z1Ew

    Click here to see the full post

    EAHAD Statement of Solidarity with Ukraine

    The European Association for Haemophilia and Allied Disorders is deeply concerned about the terrible situation in Ukraine, the killing, suffering and displacement of civilians and the devastation of many of the country’s cities. With healthcare professionals and patients being impacted by the war, EAHAD expresses its solidarity and support with the Ukrainian haemophilia community.

    Click here to see the full post

    Interview with Paul Mclaughlin, new Physio Committee Chair

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

     

    Click here to see the full post

    Interview with new EAHAD President, Dr Robert Klamroth

    On Friday 4 February 2022, the EAHAD Annual General Meeting took place at the EAHAD 2022 Virtual Congress. During the meeting, the EAHAD members voted and elected Dr Robert Klamroth as the new president of our association. Dr Klamroth succeeded Prof. Flora Peyvandi and will hold the position for the next two years (February 2022-February 2024).
     
    To get to know more about Dr Klamroth’s background, his vision and plans for EAHAD over the next two years, we asked him to answer a few questions.
     
    You can watch the full interview below.
     
    https://youtu.be/2uu5L4KtnQU
     
    The interview has been cut to shorter parts, one per question asked. You can access the full playlist here
     
    You can access a text version of the interview here

    Click here to see the full post

    EAHAD 2022 Virtual Congress Press Release

    Brussels, Belgium, 16 February 2022 - From 1 to 4 February 2022, the EAHAD 2022 Virtual Congress took place. More than 2300 delegates joined and interacted online for our second virtual Congress. Due to ongoing Covid-19 uncertainty, our 15th Annual Congress remained a fully virtual event under the direction of the Congress Organising Committee, Prof. Flora Peyvandi, Dr Robert Klamroth, and Prof. Michael Makris. Thanks to the diverse, high quality sessions and presentations, EAHAD 2022 was the virtual place-to-be for the latest in the field of haemophilia and allied disorders.

    Click here to see the full post

    2022 EAHAD Research Grants cycle now open

    We are very happy to announce that the 2022 EAHAD Research Grants cycle is now open.

    Click here to see the full post

    EAHAD 2022 Latest Clinical Trial Results session: Press Release

    Brussels, Belgium, 20 January 2022 -The 15th Congress of the European Association for Haemophilia and Allied Disorders is taking place from 2 to 4 February 2022. Under the direction of the Organising Committee, the EAHAD 2022 Virtual Congress aims to continue being a locus for the latest innovations and advances in the field of haemophilia and bleeding disorders.

    Click here to see the full post

    3rd EAHAD Physio Meet the Author Interview now available

    In the third edition of the EAHAD Physiotherapists Committee "Meet the Author" interview series, Merel Timmer speaks about her article titled "Coordinating physiotherapy care for persons with haemophilia".

    Click here to see the full post

    EAHAD Executive Committee: Call for nomination

    EAHAD is inviting its members to apply for 1 vacant spot on its Executive Committee.

    Click here to see the full post

    New membership benefit: Past Congress videos

    We are very happy to inform you that the launch of the 2022 EAHAD membership cycle brought with it a new benefit: full access to past Congress recordings!

    Click here to see the full post

    Our Nurses Committee is looking for two members to join

    The EAHAD Nurse Committee currently has two vacant spots and is inviting nurses involved in haemophilia and bleeding disorders care to apply. The positions are for a three-year term that would begin in February 2022.

    Click here to see the full post

    EAHAD 2022 Social Media Ambassadors Programme-Join us!

    Become an EAHAD 2022 Social Media Ambassador! We’re looking for applicants who will actively engage in social media to help us further promote the EAHAD 2022 scientific programme covering the latest in the haemophilia and bleeding disorders field.

    Click here to see the full post

    EAHAD Psychosocial Professionals Committee formed

    We are very happy to inform you that at the last Executive Committee meeting, the members decided to turn the Psychosocial Professionals Working Group into a standing committee of EAHAD.

    Click here to see the full post

    Newest EAHAD Physio Newsletter issue is out!

    We are very happy to inform you that the newest issue of the EAHAD Physiotherapists Newsletter has been published.

    Click here to see the full post

    Women and Girls with Bleeding Disorders POCs published

    We are delighted to inform you that our Women and Bleeding Disorders Working Group just published their 10 Women and Girls with Bleeding Disorders European Principles of Care in Haemophilia Journal.

    Click here to see the full post

    2020 EAHAD Annual Report - Now available!

    The 2020 EAHAD Annual Report has just been published. In it, you will find information on all EAHAD-related activities of the past year.

    Click here to see the full post

    Our Physio Committee is looking for a new member

    We are inviting haemophilia physiotherapists to apply for one vacant post on our Physiotherapists Committee. The position is for a three-year term that would begin in February 2022.

     

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

    Click here to see the full post

    EAHAD 2022 Virtual Congress Announcement

    After careful consideration, the EAHAD 2022 Organising Committee has decided that, due to the persistent worldwide impact and remaining uncertainty around the COVID-19 crisis, EAHAD 2022, our 15th Congress, taking place from 2-4 February 2022, will be a fully virtual event.

    Click here to see the full post

    EAHAD joins the TRANSFORM initiative

    We are very happy to join the European Alliance for Transformative Therapies (TRANSFORM), a multi-stakeholder initiative aiming to foster effective dialogue around cell and gene therapy and provide evidence-based policy recommendations to enable safe and timely patient access to these therapies.

    Click here to see the full post

    2nd EAHAD Physio Meet the Author Interview now available

    In the second edition of the EAHAD Physiotherapists Committee "Meet the Author" interview series, Paul Mclaughlin speaks about his review article titled "Physiotherapy interventions for pain management in haemophilia: A systematic review".

    Click here to see the full post

    Dr Maria Teresa Álvarez Román has joined our Executive Committee

    We are very happy to announce that Dr Maria Teresa Álvarez Román has officially joined our Executive Committee during the 2021 Annual General Meeting this past February.

    Click here to see the full post

    Haemophilia Centre Certification & Audit Working Group formed

    With the new changing landscape of haemophilia treatment in Europe, EAHAD, in partnership with the European Haemophilia Consortium, decided not only to continue with the certification project first started in 2013 but also to review and update it in order to reflect the specialised services required to monitor patients who may receive new treatments.

    Click here to see the full post

    Gene Therapy Key Components of Clinical Care Session now online

    EAHAD has recently partnered with the ISTH to collaborate on an educational initiative in the field of gene therapy in haemophilia. Together we will work to develop and distribute tailored educational material for the European haemophilia practice community.

    Click here to see the full post

    EAHAD Webinar: WGBD Principles of Care

    We are very happy to inform you that our webinar on the European Principles of Care for Women and Girls with Bleeding Disorders is now available on our YouTube channel.

    Click here to see the full post

    European PT Network Coordinators 2020 Annual Report published

    During their recent European Physiotherapists Network meeting at the EAHAD 2021 Virtual Congress this past February, our Regional Coordinators had the opportunity to give updates on what has been going on in their region, inform their colleagues on relevant initiatives and activities, as well as share any difficulties they face in their work.

    Click here to see the full post

    EAHAD 2021 Gene Therapy highlights on the ISTH GT website

    Gene Therapy highlights from the EAHAD 2021 Virtual Congress are now available on the Gene Therapy website of the International Society on Thrombosis and Haemostasis.

    Click here to see the full post

    Welcome to our new Nurses Committee member

    In August 2020, the EAHAD Nurses Committee launched a call for applications for one new member. After carefully reviewing all applications received, the Committee chose Maria Hytti, from Estonia, to join the existing members of the group.

    Click here to see the full post

    Press Release: EAHAD 2021 Congress

    Brussels, Belgium, 16 February 2021 - From 2 to 5 February 2021, the EAHAD 2021 Virtual Congress took place. More than 3100 delegates – a new EAHAD Congress record - joined online for a unique learning experience. Due to the Covid-19 global pandemic, our 14th Annual Congress became a fully virtual event under the direction of the Congress Organising Committee, Prof. Flora Peyvandi, Dr Robert Klamroth, and Prof. Michael Makris. Nevertheless, the move to the virtual realm did not hinder at all the quality of the diverse sessions and presentations.

    Click here to see the full post

    EAHAD co-signs Covid-19 vaccination guidance

    Guidance from the World Federation of Hemophilia (WFH), the European Association for Haemophilia and Allied Disorders (EAHAD), the European Haemophilia Consortium (EHC), and the U.S. National Hemophilia Foundation (NHF)
     
    It is important that haemophilia treatment centres, in close collaboration with patient organisations, take action to inform people with bleeding disorders about the Covid-19 vaccines and contribute to an effective vaccination programme.

    Click here to see the full post

    2021 EAHAD membership cycle launched!

    Our 2021 membership cycle has just been launched! Benefit from a one-year subscription to Haemophilia Journal; access our e-newsletter for regular updates on EAHAD activities and initiatives; and be eligible to join our committees and vote at the Annual General Meeting. More benefits to come in the coming months!

    Click here to see the full post

    Physio Committee Interview: Isolde Kuijlaars

    In the first edition of the EAHAD Physiotherapists Committee "Meet the Author" interview series, Isolde Kuijlaars speaks about her new original article titled "Evaluating international Haemophilia Joint Health Score (HJHS) results combined with expert opinion: Options for a shorter HJHS".

    Click here to see the full post

    Adjustable surgery workflow by our Nurses Committee

    The EAHAD Nurses Committee have just released their most recent project, the "Adjustable surgery workflow in patients with bleeding disorders". The detailed workflow adresses the different phases, tasks, and responsibilities regarding surgery in patients with a bleeding disorder. By recording what needs to be done by each person at each time, the process becomes clear, controllable, and correctable. The workflow is accompanied by a checklist, which must be adapted based on local circumstances, guidelines and practice.

    Click here to see the full post


    2021 Research Grant cycle now open

    The 2021 EAHAD Research Grant call for applications is now open. The application cycle runs yearly and the winner will be announced in July 2021.

    Click here to see the full post

    EAHAD PT Committee Letter to the Editor published in Haemophilia

    In October 2020, the EAHAD Physiotherapists Committee published in Haemophilia a letter to the editor titled “Comprehensive care on paper only? The challenge for physiotherapy provision in day to day haemophilia practice”. The Committee called upon funders, medical professionals, centre directors and patient organisations to collaborate in the development and enhanced provision of physiotherapy care.

    Click here to see the full post

    ISTH and EAHAD Educational Partnership on Gene Therapy

    The International 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.

    Click here to see the full post

    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.

    Click here to see the full post

    “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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    Some words of farewell for Piet de Kleijn

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

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

     

    Click here to see the full post

    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.

    Click here to see the full post

    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.

     

    Click here to see the full post

    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.

     

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

     

    Click here to see the full post

    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.

     

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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”.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

     

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.
     

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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:

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post

    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.

    Click here to see the full post