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March 2016 Issue - Updates, news and opportunities from EAHAD
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EAHAD News 
Successful conclusion to record-setting EAHAD Congress

It was a busy start to 2016 at EAHAD with final preparations being made for our 9th Annual Congress held from 3-5 February in Malmö, Sweden. While the Congress has been growing steadily since its start in 2008, this year we were especially surprised and pleased to see the record registration number of 1653 — almost 400 more delegates than attended last year’s congress in Helsinki!
 
We also experimented with new programme elements this year including morning case discussions, which drew good crowds despite being held before sunrise, and oral presentations of the top 10 abstract submissions. According to the participants’ survey sent out after the Congress, 91% of respondents gave the congress a rating of "excellent" or "good". The survey also helped us to gather valuable feedback from participants on programme content and format. We continue to welcome any suggestions you have for how to improve the congress in the upcoming years. 
 
For an overview of the congress, you can read the press release as well as a summary from a nurse's perspective, with this account written by Alpha Barrie, from our Nurses Committee.

Also on our website, you can browse through the congress photo gallery. 

Thank you to all of you who attended this year's congress and contributed to making it such a success. We hope to see you all again next year in Paris for our 10th Congress!
EAHAD 2016 Abstract Prize Winners
The EAHAD congress is a venue for both new and established researchers to share their work by submitting an abstract. This year for the first time, 10 researchers were selected from the abstract submitters to present their work in an oral session held on the last morning of the meeting. From these presentations, the best abstract prizes were awarded to:
 
1st Place: Cristina Santoro for her abstract: Investigation of possible correlation between clinical and laboratory phenotype in congenital FXI deficiency: Results from a single center
 2nd Place: Katharina Holstein for her abstract: Expression and release of platelet protein disulfide isomerase (PDI) is increased in patients with haemophilia A
 3rd Place (tie): Vuokko Hk Jokela for her abstract: Impact of platelet function on clinical phenotypes in von Willebrand disease: Re-evaluation of 83 patients with historical diagnosis; and Lotte Jansson, for her abstract: Treatment of FVIII inhibitors by prevention of their formation using pan DR binding ATX-F8-117: Pre-clinical efficacy in humanized transgenic mice

We congratulate the winners and wish them continued success in their research.
Executive Committee Update
 
In conjunction with the Congress, we held our Annual General Meeting. This year marked a change in the make-up of the Executive Committee, with Prof. Philippe de Moerloose's two-year term as president ending. Prof. Cedric Hermans, EAHAD's vice-president and treasurer for the past two years, now takes over as president, and Prof. Michael Makris becomes the new vice-president.

Following his two-year term as past-president, Prof. Jan Astermark now steps down from the Executive Committee. We would like to thank Jan for his commitment to and leadership of EAHAD over the past years as well as his hard work and dedication as President of this year’s congress.

For the complete list of the current Executive Committee members, please visit our website.
A conversation with EAHAD's new President, Prof. Cedric Hermans

On 4 February 2016, EAHAD held its Annual General Meeting where, among other matters, the membership voted to elect Professor Cedric Hermans as President of the association for the next two years (February 2016-January 2018).

To learn a bit more about Cedric and his vision and plans for EAHAD over the term of his presidency, we asked him to answer a few questions. 


1. Many people know you already, but for those who do not, could you tell us a bit about yourself?
I currently head the Division of Haematology, the Thrombosis and Haemostasis Unit, and the Haemophilia Centre at the Cliniques universitaires Saint-Luc, which is the university hospital of the Catholic University of Louvain, in Belgium. Like many physicians active in academic hospitals, I try to balance more or less efficiently clinical work, research, and academic commitments, while also spending as much time as possible with my wife, Valérie, and our three daughters, Victoire, Constance, and Augustine. I have the great privilege of living close to the hospital and not far from the centre of Brussels and the airport, which is a real practical advantage in helping to juggle so many priorities.
 
2. You have been on the Executive Committee of EAHAD for a few years now, what motivated you to first become involved?
Many years ago, I was given the opportunity to join the Interdisciplinary Working Group, an innovative European initiative from which emerged the European Principles of Care, the European Curriculum of Thrombosis and Haemostasis, and a multidisciplinary organisation that was named EAHAD, of which I became a member.
 
Very rapidly, I realised that EAHAD would become a unique platform to improve haemophilia care in Europe and beyond. In 2011, I was elected as a member of the Executive Committee, and following the invitation of Professor Philippe de Moerloose and the support of the Executive Committee, I served as treasurer and vice-president. Over the last three years, I have had the chance to learn a lot about the daily management of the association. 
Continue reading
New website and new look for EAHAD

As you may have noticed, EAHAD has a new look with a new logo and a refreshed website. This is part of our strategy to both improve our communication with you, the members of EAHAD, but also to give EAHAD more visibility in the wider bleeding disorders and rare disease communities.

Website
As you will have seen if you have visited www.eahad.org in the past couple of months, the website has a completely new look as well as a number of new features. In the About EAHAD section, you can get information about the mission, aims, and history of EAHAD, and learn more about EAHAD's committee members. Under the Publications tab, you can access the guidelines and resources published by EAHAD committees, while under Projects, you can learn more about the Working Parties that EAHAD supports. In the News and Resources section, you can access previous issues of our newsletter, find links to other relevant bleeding disorders websites, and look through our photo gallery.

There is also a specific section for EAHAD members, with access to Haemophilia journal and to other association documents, such as minutes from past Annual General Meetings. All members should have received a separate email with the log-in information to access this section of the website. In case, you have not received these log-in details, please contact us at info@eahad.org.

Over the coming months we will continue to add information to the website so please keep on visiting.


Logo
We have updated the EAHAD logo to give it a fresh and contemporary look, while also aligning it more closely with the bleeding disorders community. We worked with graphic designers to come up with a logo that would better highlight EAHAD's name, and also reflect more closely EAHAD's focus on the bleeding disorders community. After reviewing six initial proposals, the selection was narrowed down to two options, which were voted on by the Executive Committee last September and made public during the congress in Malmö. 

Social Media
To help create more connections among healthcare professionals working in haemophilia, we have also created an EAHAD LinkedIn page, which we encourage you to follow.  

As always, we welcome your feedback about these news communications tools and any ideas you have about how they could better serve you. 
Nurses Committee Update
The European Haemophilia Nurses Curriculum: the proof of the pudding is in the eating
by Martin Bedford, Chair of the EAHAD Nurses Committee
 
A highlight of the Nurses committee’s work last year was the publication of the nurses curriculum in Haemophilia (2016 Jan;22(1):103-9. doi: 10.1111/hae.12785. Epub 2015 Aug 17) and we were very pleased with how it was received at this year’s EAHAD congress. Ultimately, though, its success, or otherwise, will be in how effective it is in facilitating haemophilia nurse education.

To this end, our committee, with the support of EAHAD’s Executive Committee, are working on a number of initiatives:
  • Increase dissemination by translating the curriculum into a number of European languages.
  • Use the curriculum as a benchmark to indicate the knowledge base required by European haemophilia nurses. In the future, we hope that this will be used as part of the accreditation of European haemophilia centres.
  • Develop an educational strategy for European nurses based on the curriculum.
The first stage of this educational strategy is to increase nursing input into the EAHAD congresses starting with a pre-conference development day for nurses new to haemophilia. The full details of this day are still being decided, but it will be piloted in Paris at EAHAD 2017. The lessons from this pilot will then inform further development at EAHAD 2018 in Madrid, but as Sancho Panza says to Don Quixote, “al freír de los huevos lo verá” (“you’ll see when the eggs are fried”).

Watch this space for more details and do not hesitate to share any ideas or suggestions you have with us by emailing us at nurses@eahad.org.

 
Physiotherapists Committee Update
Q & A with EAHAD's Physiotherapist Committee 

After being established by four physiotherapists this summer, the EAHAD Physiotherapists Committee became a complete group in Malmö, welcoming three new members, Ruth Elise Dybvik, Rubén Cuesta-Barriuso, and Marie Katzerová representing the North, South, and Central/Eastern regions of Europe.


So that you can get to know them better, we put them to the test and had them answer a few questions. Read the article.

European Physiotherapists Network

A key priority of the Physiotherapists Committee is to begin to establish a network of physiotherapists across Europe working in haemophilia and other bleeding disorders. If you either are a physiotherapist or know of one who might be interested in collaborating with the committee, please send an email to physio@eahad.org. 

Working Parties Update
Prospective Rare Bleeding Disorders Database (PRO-RBDD)
by Roberta Palla, PhD and Prof. Flora Peyvandi
 
Born as part of the EUHANET project, the prospective Rare Bleeding Disorders Database (PRO-RBDD) stems from the previous European Network of Rare Bleeding Disorders (EN-RBD), and collects data on patients with the most severe types of RBDs, fibrinogen and factor XIII (FXIII) deficiencies, using a prospective observational cohort design. The PRO-RBDD project aims to better identify the number of affected individuals worldwide, make use of the data collected to optimise the clinical management of patients and therapy modalities.

Thanks to the development of an international network of care providers and to the use of a web-based database, the PRO-RBDD is collecting prospective data on laboratory and clinical manifestation of disease, efficacy, and safety of treatment. Genetic characterisation of patients and external quality control assessment of laboratory assays for fibrinogen and FXIII are also carried out.

Until now 62 centres have joined PRO-RBDD (38 from the EU, 17 from Asia and Middle East, 4 from the Americas, 3 from Africa and 1 from Oceania). Of these, 19 centres are actively entering data (16 from the EU, 1 from Asia and Middle East and 2 from the Americas), and 43 centres are either pending ethics approval from their institution or having difficulties in recruiting patients.

The PRO-RBDD database currently stores data on 140 patients with fibrinogen deficiency (114 from Europe) and 64 patients with FXIII deficiency (51 from Europe).

The findings observed so far confirmed the previously reported association between fibrinogen or FXIII plasmatic levels and clinical severity of patients. Further analysis aims at establishing a cut-off level of activity capable of discriminating patients who may have spontaneous major bleedings.
HC Locator

With spring already here and summer around the corner, we wanted to remind you of the resource HC Locator which allows people with bleeding disorders who are travelling to search for the closest haemophilia centre to them, find contact details, and even get driving directions.

The map also indicates which centres have been certified as European haemophilia comprehensive care centres and haemophilia treatment centres.
 
Visit the website at www.hclocator.org.

To update the information for your centre, send us an email.

For information about centre certification, please click here.
 
The HC Locator website is part of the EUHANET project, in which EAHAD is a key partner.
Coagulation Factor Variant Databases
 
We are pleased to announce that EAHAD has renewed its support for the Coagulation Factor Variant Databases working party, led by Prof. Christopher Ludlam. For more information on this project, please visit: http://www.eahad-db.org/.


 
Acknowledgments

EAHAD is grateful for the funding support it receives from its industry partners: Baxalta, Bayer, Biotest, CSL Behring, Grifols, LFB, Novo Nordisk, Octapharma, Pfizer, and Sobi.

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We greatly appreciate feedback on and suggestions for the newsletter from readers. We also accept article submissions from EAHAD members.

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

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