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November 2015 - Updates, News and Opportunities from EAHAD
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EAHAD Newsletter | November 2015
President's Message
Dear colleagues,

This year has been a very busy one for EAHAD. It is my pleasure to share with you some highlights of the activities and developments that have taken place over the past months.

2015 started with a very successful Congress held in Helsinki in February. The event, hosted by Prof Riitta Lassila, was EAHAD’s largest Congress to date with 1276 registered delegates. We are currently preparing for the 2016 EAHAD Congress, being held in Malmö, Sweden from 3-5 February, which we think will be an equally successful and enjoyable meeting.
 
In the past months, EAHAD's structure has also grown and changed:
  • In Helsinki, five new members joined our Executive Committee. I would like to extend a warm welcome to Jan, Karin, Victor, Mike and Flora, while also thanking departing committee members, Kathelijn, Pal Andre, Angiola and Elena, for their valuable contributions.
  • In September, EAHAD made an important step towards ensuring that the multidisciplinary nature of haemophilia care is reflected in our organisation with the establishment of a Physiotherapy CommitteeWe are very pleased to be working with key European physiotherapists in the field of haemophilia and look forward to developing a strong network of physiotherapists to help promote this integral aspect of comprehensive care.
  • Finally at the beginning of the year, EAHAD hired a permanent staff person to work for the organisation. We are delighted to have Ms Aislin Ryan join the organisation as Managing Director to oversee our day-to-day activities.
Of course, there is also very important on-going work by EAHAD's existing committees and working parties. You will find below updates from EUHANET, the Clotting Factor Variant Database Working Party and the Nurses Committee. In August, the Nurses Committee published “A European curriculum for nurses working in haemophilia.” On behalf of the EAHAD Executive Committee, I would like to congratulate our nurses group on this significant achievement in enhancing nursing services for people with haemophilia and allied disorders.

This year we have also collaborated closely with the European Haemophilia Consortium (EHC), joining our efforts in both advocacy initiatives and scientific activities. In late October, our two organisations, along with the World Federation of Hemophilia, took part in a four-day visit to Estonia and Latvia where we met with patients, clinicians and government officials to discuss the current status of haemophilia and future steps for the improved organisation of care at the national level in both countries. We believe this strong partnership with the EHC demonstrates the value of collaboration between patients and healthcare professionals in the improvement of bleeding disorders care. This connection with EHC is also fortified by having Aislin Ryan work in the EHC offices in Brussels on joint projects like the Baltic country visit. I wish to thank the EHC for their efforts in building this partnership.

You will find more details below on the various initiatives and activities taking place within EAHAD. As always, we encourage our members to share this newsletter with colleagues interested in collaborating with EAHAD to secure optimal care for people with bleeding disorders. 

Finally I would like to express my sincere gratitude to all collaborators and partners for your support of EAHAD. We hope to see all of you in Malmö.
 
Very best wishes,

Prof Philippe de Moerloose
EAHAD President 2014 - 2016 
EAHAD News 
Join us in Malmö for the 9th Annual EAHAD Congress
EAHAD's next congress will be held in Malmö, Sweden from 3-5 February 2016. The venue for the meeting is the newly-built Congress Centre in the middle of the city. The local organizing committee, led by Associate Professor Jan Astermark, have put together a compelling programme that is sure to provide great opportunities to gain professional knowledge and foster interesting discussions with colleagues and friends.

Please note the following dates:
Early pre-registration deadline:
25 November 2015 

Notifications sent to Abstract Submitters:
23 November 2015


For more information on the 2016 Congress and to consult the programme, please visit: www.eahad2016.org
Travel Grants
EAHAD is offering travel grants to nurses and physiotherapists wishing to attend the 2016 Congress. The travel grant amount has been set at 2,000 Euros to cover the travel and accommodation expenses to attend the congress.

To be eligible for a travel grant, candidates should be working in haemophilia-related services and be actively interested in haemophilia and allied disorders.

To apply, please send a short letter of motivation (maximum one page) on why you should receive a travel grant to aislin.ryan@eahad.org by 16 November 2015.


EAHAD Establishes New Physiotherapy Committee
We are excited to announce that this September EAHAD formally established a Physiotherapy Committee. This group will work alongside EAHAD's Executive Committee and Nurses Committee to promote physiotherapy services as a core component of comprehensive care of haemophilia and allied disorders. Its founding members, Piet de Kleijn, Sebastien Lobet, Paul McLaughlin and David Stephensen are already working hard to establish this group within Europe. As a first step, they are looking to identify other physiotherapists working in haemophilia and other bleeding disorders care.

If you are a physiotherapist and would like to collaborate with the committee or receive more information, please send an email to physio@eahad.org.

New members elected to EAHAD’s Executive Committee
EAHAD is very pleased to welcome five new members to its Executive Committee:
Dr Jan Blatny (Czech Republic)
Dr Karin Fijnvandraat (the Netherlands)
Dr Victor Jimenez-Yuste (Spain)
Prof Mike Makris (United Kingdom)
Prof Flora Peyvandi (Italy)

 
They join current Executive Committee members Prof Philippe de Moerloose (Switzerland, EAHAD President), Prof Cedric Hermans (Belgium, EAHAD Vice-President), Assoc. Prof Jan Astermark (Sweden, EAHAD Past President), Dr Gerry Dolan (United Kingdom), Dr Robert Klamroth (Germany), Dr Roseline d'Oiron (France), Prof Riitta Lassila (Finland) and Marlies Schrijvers, PhD (the Netherlands, Chair of EAHAD's Nurses Committee).

EAHAD would also like to take this opportunity to thank the outgoing Executive Committee members for their valuable effort and contributions: Dr Kathelijn Fischer, Dr Pal Andre Holme, Dr Angiola Rocino and Dr Elena Santagostino.

EAHAD welcomes new Managing Director
EAHAD is delighted to welcome Aislin Ryan to the organization as our Managing Director. Aislin comes to EAHAD with five years' experience working in the area of bleeding disorders. From 2007-2012, she worked for the World Federation of Hemophilia (WFH) in both communications and programme management roles, including coordinating programmes focused on training and building the capacity of healthcare professionals working in haemophilia services around the world.

Aislin has a Master's degree in Public Health from Simon Fraser University in Vancouver, Canada and a Bachelor's degree in International Development Studies from McGill University in Montreal, Canada. She is also trained as a translator and speaks English, French and Spanish.

In her role as Managing Director, Aislin's responsibilities include formalizing EAHAD's organisational structure and administrative processes, overseeing our communications strategy, increasing the involvement of healthcare professionals from different disciplines and from across Europe in our work and collaborating with other organizations working in bleeding disorders care, namely, the European Haemophilia Consortium (EHC). Aislin is based in Brussels where she works in the offices of the EHC and can be reached at aislin.ryan@eahad.org.
Working Party Updates

EUHANET
The European Commission-funded EUHANET project, in which EAHAD is a key partner, concluded in May 2015 and final reports are now being completed. Much was achieved over the course of the three-year project, including the certification of 113 European haemophilia centres in 31 countries; the development of the comprehensive Haemophilia Central website; the expansion of the EUHASS project, which now includes 86 centres from 26 countries; and the collection of prospective data on fibrinogen and FVIII deficiencies through the PRO-RBDD project.
 
Although the European funding has finished, both EAHAD and the EHC (the European patients’ organization) have indicated their commitment to continue the EUHANET project. For the immediate future the format will remain the same.
 
The European Commission is due to formally announce next year their plan for European Reference Networks and further information on how EUHANET intends to interact with this plan will be announced in the next newsletter.
- Prof. Mike Makris, EUHANET Project Leader
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Have you visited the EAHAD factor VIII, IX and VWF variant database sites?

 
Available now with easy access are listings of known variants of factors VIII, IX and vWF at www.eahad-db.org. You can readily view a wealth of structural and clinical information about each variant which is free to use and will be of value to both clinicians and researchers. The ‘In Depth Mutation Analysis’ of each variant reveals the features of each mutation and predicts its consequences – included is a pictorial representation of the mutation site on the factor VIII molecule. In the very near future similar information will be available for factor VII and later factors X and XI. This project is under the direction of the EAHAD Working Party on Clotting Factor Variant Databases. We are keen to receive feedback and suggestions from users for improvements (db-admin@eahad-db.org). Please visit the site and view the many features!
- Christopher Ludlam (Chairman) and Geoffrey Kemball-Cook (Secretary)
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Nurses Committee Update
The EAHAD Nurses Committee is busy with a number of exciting ongoing projects.

EAHAD 2016: Again this year the nurses committee will participate in the interactive Multidisciplinary Educational Session held on the first morning of the Congress.  Siri Gronhaug will present this year on behalf of the nurses and is working in collaboration with hematologists, a physiotherapist and a psychologist to plan this session.

The Nurses Committee will also organise a lunch session in Malmö, which will provide an opportunity for nurses and other allied health professionals to share their work with their peers in an informal setting.

Nurses Curriculum: In Malmö, the nurses are excited to present on the "European curriculum for nurses working in haemophilia", which was recently published in Haemophilia

Guidelines for Haemophilia Nursing: Work is already underway on the development of guidelines for haemophilia nursing care. The project will bring in the expertise of nurses from around Europe as well as that of a patient representative. Nurses working in Europe who are interested in collaborating on this project are invited to contact Marlies Schrijvers at: L.H.Schrijvers-3@umcutrecht.nl
- Marlies Schrijvers, PhD, Chair of EAHAD's Nurses Committee
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Opportunities
The Journal of Haemophilia Practice is a new online journal focusing on the care of people living with bleeding disorders. JHP is published by Haemnet, an independent UK-registered charity that supports education and research for people affected by bleeding disorders, and the professionals who manage them. Haemnet believes that sharing experience benefits everyone. JHP is aimed at all members of the haemophilia multi-disciplinary care team, but offers a particular platform for nurses and physiotherapists to share their work and experience. To this end, we positively encourage submission of small scale studies, non-traditional research and case studies from across the world. For more information, please visit the journal’s website at www.haemjournal.com.
Membership Renewals

It is that time of year again for you to renew your EAHAD membership. Last month you should have received an email with instructions on how to renew your membership for 2015-2016. If you did not receive this message or if you would like more information on EAHAD membership, please contact EAHAD's administrative office at enquiries@eahad.org

Stay in touch

We want to hear from you!
EAHAD would be grateful to receive any feedback or suggestions you have for the Newsletter. 

If you would like to submit an article for consideration by the editor, please send to info@eahad.org

Copyright © 2015 European Association for Haemophilia and Allied Disorders, All rights reserved.


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