Elections - World Federation of Hemophilia - main
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WORLD FEDERATION OF HEMOPHILIA<br />
M EDICAL A DVISORY B OARD N EWS<br />
Message from the Medical Advisory Board chair<br />
Message from the Medical Advisory Board Chair<br />
Dr. Alison Street (Australia), VP Medical and the Medical Advisory Board chair<br />
W ith<br />
May 2012 – Volume 5 • No 1<br />
December 2010 – Volume 3 � No 2<br />
Dr. Alison Street (Australia), VP the Medical WFH and 2012 the <strong>World</strong> Medical Advisory Board Chair<br />
Congress just around the<br />
Wcorner, the focus <strong>of</strong> this edition <strong>of</strong> our<br />
newsletter<br />
e have<br />
is<br />
had<br />
the engaging<br />
a very productive<br />
Congress<br />
few months since the WFH<br />
program and other activities we have<br />
<strong>World</strong> Congress in Buenos Aires,<br />
planned for Paris in July. Participating<br />
and all our Medical Advisory<br />
at Congress is a unique opportunity to<br />
Board (MAB) committees have<br />
meet like-minded people and poten-<br />
continued to work hard. Congress<br />
material<br />
tial research<br />
is now<br />
collaborators,<br />
available on<br />
all<br />
the<br />
with the<br />
same goal in mind: Improving<br />
WFH website.<br />
treatment<br />
I would<br />
and quality<br />
like to<br />
<strong>of</strong><br />
wel-<br />
life<br />
for people with inherited come bleeding all new disorders. committee It is members a meeting<br />
space, an educational and experience, again thank and an those inspiring, who ener- are<br />
continuing, getic event. This for all Congress, your support the WFH and has efforts much to on celebrate, behalf<br />
<strong>of</strong> including the <strong>World</strong> the <strong>Federation</strong> launch <strong>of</strong> its <strong>of</strong> 50<strong>Hemophilia</strong> (WFH).<br />
I would also like to take this opportunity to conpharmaceutical<br />
company-sponsored studies in areas <strong>of</strong><br />
strategic interest to the WFH, such as inhibitor development<br />
and implementation <strong>of</strong> prophylaxis programs.<br />
With our position as a global organization that unites<br />
both patients and healthcare pr<strong>of</strong>essionals, the WFH<br />
will foster multinational research relevant to the bleeding<br />
disorders community, establish strategic research<br />
partnerships, and ensure patient protection and ethical<br />
practices.<br />
These themes <strong>of</strong> patient and researcher collaboration<br />
will be expanded as part <strong>of</strong> our first Global<br />
Research Forum in Montreal, from March 22-23, 2011.<br />
This will be an interactive meeting for about 60 invited<br />
gratulate the medical pr<strong>of</strong>essionals who were recog- scientific experts, agency regulators, patient leaders,<br />
nized at the WFH Awards Ceremony in Buenos Aires. health pr<strong>of</strong>essionals, ethicists, researchers, and indus-<br />
Read more about the recipients on pages 8 and 9. try representatives. Discussions at the Forum will help<br />
At our recent Medical Advisory Board meeting held identify our community’s most pressing challenges<br />
in Montreal in November we had many opportunities and unmet research needs, and help the WFH build a<br />
to discuss common goals. Highlights from each com- framework for its new research initiative.<br />
mittee report are reflected in this newsletter.<br />
In closing, I would like to wish you all a very<br />
The roles <strong>of</strong> the newly established Research<br />
happy end to 2010 and a healthy and successful year<br />
Committee are steadily emerging, including encouragement<br />
<strong>of</strong> multi-centre, multidisciplinary, and non-<br />
ahead.<br />
In this issue<br />
Dental Report . . . . . . 2<br />
IHTC Report . . . . . . . . 2<br />
Lab Sciences<br />
Report . . . . . . . . . . 4<br />
MSK Report . . . . . . . . 4<br />
Nurses’ Report . . . . . 6<br />
Psychosocial<br />
Report . . . . . . . . . . 6<br />
Report . . . . . . . . . . 7<br />
Sports Camp . . . . . . . 7<br />
Award Winners . . . . . 8<br />
th anniversary celebrations, the<br />
40th anniversary <strong>of</strong> the IHTC Program, and the fact that this<br />
will be the 30th Clinical Practice, facilitated by pr<strong>of</strong>essor Frits Rosendaal<br />
(ISTH); Publishing facilitated by pr<strong>of</strong>essor Christine Lee,<br />
editor <strong>of</strong> Haemophilia; and Gene Transfer Technologies,<br />
chaired by pr<strong>of</strong>essor David Lillicrap.<br />
We have invited our multinational, multidisciplinary<br />
experts to present their most relevant and contemporary<br />
data and have increased the number <strong>of</strong> free paper sessions,<br />
including “late-breaking” sessions, compared with previous<br />
congresses, to maximize participation and share our collective<br />
knowledge. The number and quality <strong>of</strong> the pr<strong>of</strong>fered<br />
abstracts continues to grow, reflecting the strong commitment<br />
<strong>of</strong> our communities to this meeting.<br />
It is almost time for the “Changing <strong>of</strong> the Guard” on<br />
many MAB committees, as chair and executive positions<br />
become available, and I again thank all chairs and<br />
WFH Congress.<br />
committee members for their input over the past two years.<br />
With that in mind, many <strong>of</strong> the lectures will touch on the Over the next couple <strong>of</strong> years, a major activity <strong>of</strong> these<br />
history <strong>of</strong> hemophilia and the evolution <strong>of</strong> our knowledge committees will be to engage in development and oversight<br />
about inherited bleeding disorders. This retrospective look at <strong>of</strong> projects in line with the WFH research strategy, a plenary<br />
the WFH’s history will pay tribute to its community that has topic at this year’s Congress. Please actively participate in<br />
endeavoured to improve treatment and care the world over. your committee’s programs at Congress to help define those<br />
There are many diverse topics to be covered in scien- issues <strong>of</strong> most importance for future collaborative study.<br />
tific sessions, including new scientific research and clinical The Congress Program Committees and MAB members<br />
trials pr<strong>of</strong>iling advances in treatment products and clinical<br />
care. Top specialists and researchers will provide updates<br />
welcome you to Paris and look forward to your feedback for<br />
the WFH 2014 <strong>World</strong> Congress in Melbourne, Australia.<br />
on HCV/HIV, models <strong>of</strong> prophylaxis, and debate the use <strong>of</strong> Finally, this is my last column for Medical Advisory<br />
longer-acting products versus gene therapy. These sessions Board News; as the chair <strong>of</strong> the board, and as vice-president<br />
will be a very contemporary look at the state <strong>of</strong> knowledge<br />
and practice <strong>of</strong> hemophilia and other bleeding disorders.<br />
In pursuit <strong>of</strong> our strategic objective to encourage and<br />
support data collection and clinical outcomes research,<br />
on the first day <strong>of</strong> Congress we have workshops in Good<br />
medical <strong>of</strong> the WFH, I would like to take this opportunity<br />
to say thank you to the bleeding disorders community, for<br />
your enthusiasm, determination, and perhaps most importantly,<br />
your friendship. Thank you for all <strong>of</strong> your support<br />
over the years, and enjoy the 2012 Congress experience.<br />
WFH Medical Advisory Board News Published by the <strong>World</strong> <strong>Federation</strong> <strong>of</strong> <strong>Hemophilia</strong>.<br />
Editorial Board: Paula Bolton-Maggs (U.K.); Eduardo Rey (Argentina); Assad Haffar (WFH); Keith<br />
Hoots (U.S.A.); Steve Kitchen (U.K.); David Lillicrap (Canada); Craig McEwen (WFH ); Elizabeth<br />
Myles (WFH); David Page (Canada); Elizabeth Paradis (Canada); Pier Luigi Solimeno (Italy); Alok<br />
In this issue<br />
Srivastava (India); Alison Street (Australia); Anne Duffy (Ireland). Editor: Michelle Grady (WFH)<br />
Message from the Medical<br />
Advisory VWD Board and chair RBD<br />
Congress workshops and<br />
1<br />
1425 René Lévesque Blvd. West, Suite 1010, Montréal, Québec H3G 1T7 Canada<br />
multidisciplinary sessions 2<br />
Tel.: +1 (514) 875-7944 Fax: +1 (514) 875-8916 E-mail: wfh@wfh.org<br />
Committee Membership 5<br />
The Medical Advisory Board News is supported by funding from Biogen Idec <strong>Hemophilia</strong>.<br />
Committee Committee meetings at Congress 5<br />
Permission to translate and/or reprint all contents <strong>of</strong> the WFH Medical Advisory Board News is granted to interested non-<br />
Members pr<strong>of</strong>it hemophilia <strong>of</strong> MAB. organizations, Back row L-R: with Nigel prior S. approval Key, MD; and appropriate Eduardo Rey, acknowledgment MD; Alison <strong>of</strong> Street, the WFH. MD; Permission Mark Skinner; does not Paula<br />
WFH 2012 <strong>World</strong> Congress in<br />
Paris, France: Calendar Sessions <strong>of</strong><br />
7<br />
Bolton-Maggs, extend to reproduction, MD; Alok in Srivastava, whole or in part, MD; for Steve sale or Kitchen. use in conjunction Front row with L-R: commercial Elizabeth purposes. Paradis; Magdy El Ekiaby, MD;<br />
Anne Duffy. Not shown here: Keith Hoots, MD; David Lillicrap, MD; Johnny Mahlangu, MD; Luigi Piero Solimeno, MD.<br />
Members . . . . . . . 10<br />
Events . . . . . . . . . 11
Congress workshops and multidisciplinary sessions<br />
The following workshops will be <strong>of</strong>fered on Sunday, July 8. The workshops are free<br />
for Congress delegates but space is limited so registration for the workshop <strong>of</strong><br />
choice is highly recommended. Additionally, you can find some <strong>of</strong> the multidisciplinary<br />
sessions highlighted below. Registration is on a first come, first served basis. If you have<br />
already registered for Congress, email your choices to Christina Mills. For more information<br />
about the sessions, please contact Hélène Lussier.<br />
NURSES<br />
NURSES WORKSHOP<br />
Chair: Elizabeth Paradis<br />
Sunday, July 8, 9:15-15:00<br />
This pr<strong>of</strong>essional development workshop for nurses will<br />
include the roll-out <strong>of</strong> a new WFH Nurses Resource Kit.<br />
Penny McCarthy, WFH Nursing Committee secretary, will<br />
present the kit and demonstrate its use. The workshop will<br />
also include a presentation from a French representative,<br />
wherein one <strong>of</strong> the national hot topics will be discussed.<br />
Other topics will include: Burnout and how to alleviate<br />
its effects on us as caregivers; hemophilia-centred nursing<br />
research and how to develop an abstract or poster.<br />
For the first time, the WFH 2012 <strong>World</strong> Congress will<br />
include four pr<strong>of</strong>essional development sessions for nurses<br />
in the <strong>main</strong> program. These sessions have been designed for<br />
nurses by nurses.<br />
Nurses sessions<br />
RBD: Familiar name, rare disorder<br />
Monday, July 9, 16:30-18:00<br />
Although the names <strong>of</strong> these disorders are becoming<br />
more familiar, rare bleeding disorders still leave the<br />
hemophilia nurse with many questions. Several issues<br />
surrounding these unique disorders will be addressed.<br />
<strong>Hemophilia</strong> nursing in the surgical setting<br />
Tuesday, July 10, 8:45-10:00<br />
<strong>Hemophilia</strong> complicates all types <strong>of</strong> surgery. The hemophilia<br />
nurse plays a pivotal role in ensuring safe and successful<br />
outcomes. <strong>Hemophilia</strong> nurses will share their varied<br />
experiences.<br />
Nursing beyond the treatment centre<br />
Wednesday, July 11, 16:30-18:00<br />
This session will give insight into various nurse training<br />
models from around the world and how hemophilia nurses<br />
add value to the training outside the treatment centre.<br />
Inhibitors: A nurse’s challenge<br />
Thursday, July 12, 14:15-15:45<br />
Inhibitors are still considered one <strong>of</strong> the more distressing<br />
treatment complications <strong>of</strong> hemophilia. This session will<br />
address the nurse’s role in the management <strong>of</strong> inhibitors.<br />
MUSCULOSKELETAL<br />
PHYSIOTHERAPY WORKSHOP<br />
Chair: Angela Forsyth<br />
Time: Sunday, July 8, 9:30-14:00<br />
The Physiotherapy workshop on Sunday, July 8, will open<br />
with physiotherapy and rehabilitation issues. And with the<br />
launch <strong>of</strong> the WFH 50 th anniversary celebrations happening<br />
at this Congress, the workshop will also include presentations<br />
to highlight the past, the present, and the future <strong>of</strong> physiotherapy.<br />
Clinical and research topics will also be discussed.<br />
ORTHOPEDIC WORKSHOP<br />
Chair: Gianluigi Pasta<br />
Time: Sunday, July 8, 14:30-16:00<br />
This 90-minute session includes a presentation on sports<br />
and people with hemophilia, as well as a presentation on<br />
the preliminary data <strong>of</strong> knee registry, and eight pr<strong>of</strong>essional<br />
development sessions for physiotherapists and orthopedics<br />
that will include both the surgical and non-surgical management<br />
<strong>of</strong> patients with bleeding disorders.<br />
MSK sessions<br />
Management <strong>of</strong> the elbow joint<br />
Thursday, July 12, 8:45-10:00<br />
This session will review critical aspects <strong>of</strong> the management<br />
<strong>of</strong> hemophilic arthropathy <strong>of</strong> the elbow and cover conservative<br />
management and splinting; arthroscopic synovectomy;<br />
fixed flexion contracture; symptomatic ulnar nerve; and the<br />
excision <strong>of</strong> the results <strong>of</strong> elbow arthroplasty in the hemophilia<br />
population, with emphasis on the indications, the possible<br />
technical difficulties associated with the procedure, and the<br />
outcomes <strong>of</strong> it.<br />
2 WFH Medical Advisory Board News • May 2012
Congress workshops and multidisciplinary sessions (cont’d)<br />
Musculoskeletal problems in persons with inhibitors:<br />
How do we treat?<br />
Wednesday, July 11, 8:45-10:00<br />
Treatment options can differ depending on whether<br />
there are bypassing agents available or not. This<br />
session will demonstrate the non-surgical possibilities<br />
in patients with inhibitors to prevent or manage an<br />
advanced degree <strong>of</strong> arthropathy. Pre-operative rehabilitation<br />
programs that postpone or prevent surgery will be<br />
presented as well.<br />
Other topics include EOS in inhibitor patients, an<br />
update on pre-operative and post-operative hematological<br />
treatment, and the cost-effectiveness and ethics <strong>of</strong><br />
surgery.<br />
Arthropathy <strong>of</strong> the knee: When things go wrong<br />
Thursday, July 12, 14:15-15:45<br />
This session will include a discussion about the surgical and<br />
non-surgical treatment <strong>of</strong> stiff knee in countries where the<br />
availability <strong>of</strong> factor replacement differs from developed<br />
countries. The presentation will highlight the benefits and<br />
pitfalls <strong>of</strong> replacement surgery in stiff knees; post-operative<br />
rehabilitation in such patients; incidence <strong>of</strong> infection after<br />
total knee replacement in people with hemophilia; strategies<br />
to manage infected total knee replacements; and the rehabilitation<br />
program for a revised knee.<br />
Consequences <strong>of</strong> intra-articular bleeding in hemophilia:<br />
Science to clinical practice and beyond<br />
Monday, July 9, 8:45-10:00<br />
This session will discuss how basic scientific results can be<br />
transferred to clinical practice. Topics to be discussed include:<br />
Is it necessary to aspirate when it’s known that blood in the<br />
joint is harmful to cartilage; inflammatory cytokines are<br />
involved in the pathogenesis <strong>of</strong> hemophilic arthropathy, so is<br />
it necessary to use anti-inflammatory drugs to stop the evolution<br />
<strong>of</strong> arthropathy; the same is true for the synovium – is<br />
it possible to prevent chronic synovitis; and when should a<br />
synovectomy be performed?<br />
Pediatric Issues: Differences between developed and<br />
developing countries in hemophilia care<br />
Wednesday, July 11, 16:30-18:00<br />
Prophylaxis regimens differ between developed and developing<br />
countries, and this session will explore how and<br />
why that is, and the results <strong>of</strong> this difference. Surgical and<br />
non-surgical options between developed and developing<br />
countries will also be discussed.<br />
PSYCHOSOCIAL<br />
PSYCHOSOCIAL WORKSHOP<br />
Chair: Ruud Bos and Richa Mohan<br />
Time: Sunday, July 8, 9:00-16:15<br />
This full-day workshop will provide an opportunity to<br />
increase your knowledge and skills, exchange ideas and<br />
experiences, and network with psychosocial colleagues from<br />
around the world. Every effort has been made to ensure that<br />
the program is comprehensive and will focus on key topics<br />
in psychosocial care, psychological research, and clinical<br />
case presentations. There will be exciting presentations on<br />
the following topics:<br />
• Pain Management by Michelle Witkop and Angela<br />
Lambing<br />
• Risk Reduction & Harm Prevention in Sports by Dawn<br />
von Mayrhauser & Lauren McKernan<br />
• Research in Sports Assessment by Sylvia von Mackensen<br />
• HERO Survey Results by Frederica Cassis<br />
• Impact <strong>of</strong> <strong>Hemophilia</strong> on Partners/Spouses by Anne<br />
Duffy and Tony Roberts<br />
• Dealing with Sexuality and Intimacy in People with<br />
<strong>Hemophilia</strong> by Dr Woet Gianotten<br />
• Clinical Case Presentations & Discussion by Sylvia von<br />
Mackensen and Irene Fuchs<br />
Psychosocial sessions<br />
Adherence<br />
Monday, July 9, 16:30-18:00<br />
This session will address the subject <strong>of</strong> cultural views and<br />
approaches to adherence. The question, “Is patient education<br />
enough?” will be asked, and the session will review key<br />
study results.<br />
Ethical issues<br />
Tuesday, July 10, 14:15-15:45<br />
This session will explore the Code <strong>of</strong> Ethics and how it is<br />
defined in the United States, ethical issues as identified<br />
by psychosocial workers, the issue <strong>of</strong> disclosure, and clinical<br />
research trials. It will illustrate the obligations <strong>of</strong> the<br />
researcher and the hemophilia care team.<br />
3 WFH Medical Advisory Board News • May 2012
Congress workshops and multidisciplinary sessions (cont’d)<br />
Parents empowering parents: A global perspective<br />
Wednesday, July 11, 16:30-18:00<br />
Ed Kuebler and Danna Merritt will lead this session, which<br />
has been developed to support parents <strong>of</strong> children with<br />
bleeding disorders.<br />
Coping strategies<br />
Thursday, July 12, 14:15-15:45<br />
Life is challenging. Living with hemophilia is even more so.<br />
This session will cover strategies and different tools for families<br />
and patients to help with coping with the disease during<br />
the different stages in order to increase overall well-being.<br />
LABORATORY SCIENCES<br />
LABORATORY SCIENCES WORKSHOP<br />
Chair: Steve Kitchen<br />
Time: Sunday, July 8, 9:00-12:00<br />
The Laboratory Sciences pr<strong>of</strong>essional development sessions<br />
will open with a pre-analytical variables and coagulometers<br />
evaluation workshop. Speakers will include Guiseppi Lippi,<br />
Pierre Toulon, Marion Echenagucia, Sukesh Nair, and Steve<br />
Kitchen.<br />
In addition to our pr<strong>of</strong>essional development workshop, the<br />
Laboratory Sciences Committee will also present the following<br />
four 90-minute sessions during the Congress program.<br />
Laboratory Sciences sessions<br />
Difficulties and pitfalls in the laboratory diagnosis <strong>of</strong><br />
bleeding disorders<br />
Tuesday, July 10, 16:30-18:00<br />
Von Willebrand disease (VWD) is the most common inherited<br />
bleeding disorder but variable severity and several<br />
classification types mean that diagnosis is <strong>of</strong>ten not straightforward.<br />
In many countries the assays are not readily<br />
available and/or are not standardized. The latest methods<br />
and the basis <strong>of</strong> VWD are discussed here, together with<br />
information from the International Quality Assessment<br />
Program (IEQAS).<br />
Standards and monitoring treatment<br />
Wednesday, July 11, 16:30-18:00<br />
Accuracy and reproducibility <strong>of</strong> laboratory measurements<br />
are important in the diagnosis and treatment <strong>of</strong> bleeding<br />
disorders. This article describes the process <strong>of</strong> establishment<br />
<strong>of</strong> international standards and some <strong>of</strong> the problems that<br />
have arisen in standardization <strong>of</strong> these measurements.<br />
Genetics <strong>of</strong> hemostasis<br />
Thursday, July 12, 8:45-10:00<br />
This session reviews the evolution <strong>of</strong> genetics over the last<br />
five decades as a tool for bleeding disorder investigations,<br />
the recent advances in molecular techniques that have<br />
contributed to improved genetic diagnosis <strong>of</strong> this condition,<br />
and the development and utility <strong>of</strong> pr<strong>of</strong>iciency testing<br />
programs and reference materials for genetic diagnosis <strong>of</strong><br />
bleeding disorders.<br />
Global hemostasis and point <strong>of</strong> care testing<br />
Monday, July 9, 16:30-18:00<br />
Topics in this session will include thrombin generation in<br />
bleeding disorders: Current state <strong>of</strong> the art; whole blood<br />
thromboelastometry; clot waveform analysis; and diagnostic<br />
usefulness <strong>of</strong> adenosine triphosphate release assays<br />
and aggregation tests with native or platelet count adjusted<br />
platelet rich plasma.<br />
OTHER WORKSHOPS<br />
WOMEN AND BLEEDING DISORDERS WORKSHOP<br />
Chair: Dr. Rezan Kadir<br />
Time: Sunday, July 8, 13:00-16:00<br />
The WFH’s VWD and Rare Bleeding Disorders Committee<br />
has developed a three-hour presentation session for this<br />
year’s Congress. Dr. Rochelle Winik<strong>of</strong>f from Canada will<br />
explain how to establish and manage VWD and RBD, as<br />
well as discuss the role <strong>of</strong> the nurse coordinator in a multidisciplinary<br />
clinic for women with bleeding disorders. Dr.<br />
Ingrid Pabinger from Austria will present on the management<br />
<strong>of</strong> labour and delivery for all bleeding disorders and<br />
will cover aspects <strong>of</strong> advance planning for where to deliver,<br />
how to assess the need for hemostatic treatment, pain<br />
relief, how to manage the fetus during labour and delivery,<br />
and how to manage delivery <strong>of</strong> the placenta. Other speakers<br />
and topics will include Ann-Marie Nazzaro from the U.S.A.<br />
speaking on the Foundation for Women and Girls with<br />
Blood Disorders; Mans Edlund from Sweden will present on<br />
gynecological problems in women with bleeding disorders;<br />
Rezan Kadir from the U.K. and Flora Peyvandi from Italy<br />
will discuss prenatal diagnosis and antenatal complications;<br />
Stephan Lethagen from Sweden will present on hemostatic<br />
agents in pregnancy; Andra James from the U.S.A. will<br />
4 WFH Medical Advisory Board News • May 2012
Congress workshops and multidisciplinary sessions (cont’d)<br />
talk about post-partum hemorrhage and how to predict,<br />
prevent, and manage. The session will conclude with case<br />
studies from Debra Pollard from the U.K.<br />
CLINICAL RESEARCH WORKSHOP<br />
Chair: Frits Roosendaal<br />
Time: Sunday, July 8, 8:30-12:30<br />
This clinical research session will present procedures<br />
on initiating and conducting clinical research projects,<br />
involving patient populations with an associated biological<br />
or clinical outcome question.<br />
The workshop will begin with some background on<br />
required infrastructures and resources and then on more<br />
detailed accounts <strong>of</strong> the methodologies and analysis that<br />
may be needed in clinical research.<br />
Publishing workshop (Wiley-Blackwell)<br />
Chair: Christine Lee<br />
Time: Sunday, July 8, 13:30-15:00<br />
This workshop, intended for researchers and all clinicians<br />
who have yet to publish a paper or who have published<br />
Committee membership<br />
<strong>Elections</strong> for <strong>of</strong>ficer positions for<br />
the following multidisciplinary<br />
committees will be held at the WFH<br />
<strong>World</strong> Congress in Paris: Dental,<br />
Lab Sciences, Musculoskeletal, and<br />
Nurses.<br />
The Musculoskeletal, Nurses,<br />
and Dental Committees are also<br />
looking for members. Committee<br />
Terms <strong>of</strong> Reference state that WFH<br />
membership in good standing is a<br />
requirement for all members <strong>of</strong> the<br />
multidisciplinary committees.<br />
Visit the membership section at<br />
www.wfh.org to become a member,<br />
or for more information on your<br />
membership status contact fundraising<br />
& membership <strong>of</strong>ficer,<br />
Marlene Spencer.<br />
To committee members who have<br />
already signed up—Thank you!<br />
only minimally, will be presented by the three editors<br />
and the journal manager <strong>of</strong> Haemophilia, the <strong>of</strong>ficial<br />
journal <strong>of</strong> the <strong>World</strong> <strong>Federation</strong> <strong>of</strong> <strong>Hemophilia</strong>. The workshop<br />
will cover all aspects <strong>of</strong> publishing, including the<br />
writing, submission, and review process. Specific issues<br />
surrounding the impact factor, plagiarism, ethics, and<br />
conflict <strong>of</strong> interest will be considered. The production<br />
process will be explained. There will also be some discussion<br />
about the future direction <strong>of</strong> publishing, particularly<br />
in the face <strong>of</strong> an increasing need for online resources.<br />
There will be opportunity to ask questions.<br />
Gene Therapy workshop<br />
Chair: David Lillicrap<br />
Time: Sunday, July 8, 15:30-17:30<br />
This 90-minute session is designed for clinicians, laboratory<br />
scientists, and other health pr<strong>of</strong>essionals. It will focus<br />
on basic components <strong>of</strong> a gene therapy protocol, the pros<br />
and cons <strong>of</strong> gene delivery methods, and the organization <strong>of</strong><br />
clinical trials.<br />
Committee meetings at Congress<br />
Dental Committee<br />
Wednesday, July 11, 12:30-14:00<br />
Room 243<br />
IEQAS Committee<br />
Monday, July 9, 8:15-10:15<br />
Room: 243<br />
IHTC Director’s Meeting<br />
Monday, July 9 12:30-14:00<br />
Room: 241<br />
Laboratory Sciences Committee<br />
Wednesday, July 11, 715:-8:30<br />
Room 241<br />
Medical Advisory Board<br />
Tuesday, July 10, 12:30-14:00<br />
Room 241<br />
MSK Committee<br />
1st Meeting: Wednesday, July<br />
11, 12:30-14:00<br />
Room 241<br />
Nurses Committee<br />
1st meeting:<br />
Tuesday, July 10, 7:15-8:30<br />
Room 243<br />
2nd meeting:<br />
TBD<br />
Psychosocial Committee<br />
1st meeting:<br />
Monday, July 9, 14:00-16:00<br />
Room 243<br />
2nd meeting:<br />
Wednesday, July 11, 7:15-8:30<br />
Room 243<br />
5 WFH Medical Advisory Board News • May 2012
6 WFH Medical Advisory Board News • May 2012
WFH 2012 <strong>World</strong> Congress in Paris, France: Sessions<br />
PLENARY SESSIONS<br />
• WFH President’s Address: Closing the Global Gap<br />
in Care – Past, Present, and Future Advances to<br />
Achieve Treatment for All – Mark Skinner, U.S.A.<br />
• New Approaches/Horizons to the Management <strong>of</strong><br />
Hepatitis C in <strong>Hemophilia</strong> in 2012 – (TBC)<br />
• Implementing Musculoskeletal Outcome Assessments<br />
in Clinical Practice – Brian Feldman, Canada<br />
• Personalized Prophylaxis – Peter Collins, U.K.<br />
• Developing Models <strong>of</strong> <strong>Hemophilia</strong> Care – Alison<br />
Street, Australia<br />
• Prevention and Prediction <strong>of</strong> Inhibitor<br />
Development – Jan Astermark, Sweden<br />
• Gene Therapy for Severe <strong>Hemophilia</strong> B – Ted<br />
Tuddenham, U.K.<br />
• Inherited Bleeding Disease Research: Opportunities<br />
for the <strong>World</strong> <strong>Federation</strong> <strong>of</strong> <strong>Hemophilia</strong>– David<br />
Lillicrap, Canada<br />
MEDICAL SESSIONS<br />
• Treatment <strong>of</strong> Human Immunodeficiency virus and<br />
Hepatitis B virus Infections<br />
• Models <strong>of</strong> Prophylaxis Part 1<br />
• Trial Updates and Standardization Issues<br />
• Debate <strong>of</strong> Long-Acting Products Versus Gene Therapy<br />
• Outcome Assessment and Limitations<br />
• Von Willebrand Disease Biology<br />
• Inhibitors<br />
• Clinical Trial Design in <strong>Hemophilia</strong><br />
• Clinical Aspects – How I Treat Inhibitors – Case<br />
Studies<br />
• Rare Bleeding Disorders<br />
• Inherited Platelet Disorders<br />
• Late-Breaking Session I<br />
• Late-Breaking Session II<br />
MULTIDISCIPLINARY SESSIONS<br />
• Family Issues: From Cradle to Tween<br />
• Family Issues: No Longer a Teenager, Not Yet an Adult<br />
• The Economics <strong>of</strong> <strong>Hemophilia</strong> Care<br />
• Outreach – von Willebrand Disease: Examples from<br />
Africa<br />
• HCV/HIV: Setbacks and Advancements<br />
• Practical Tips for (Re)-Discovering Movement<br />
• Psychosocial Models in <strong>Hemophilia</strong>: Designs<br />
Around the <strong>World</strong><br />
• Assessing Quality <strong>of</strong> Life in Patients with Bleeding<br />
Disorders<br />
• E-Communications: Benefits and Pitfalls<br />
• Women’s Voices<br />
• Youth: Preparing Our Future<br />
• Patients: Members <strong>of</strong> the Care Team<br />
• Comprehensive Care – Case Studies<br />
• Developing Education Models<br />
• Ageing<br />
• Global Models <strong>of</strong> Pain Management<br />
• Working Together: Lessons Learnt<br />
• Outreach Methodology: <strong>Hemophilia</strong><br />
• Questions and Answers: Sexual Health<br />
• Women and Bleeding Disorders<br />
• Debate: Seeing Both Sides<br />
MUSCULOSKELETAL SESSIONS<br />
• Management <strong>of</strong> the Elbow Joint<br />
• Musculoskeletal Problems in Persons with<br />
Inhibitors: How Do We Treat?<br />
• Arthropathy <strong>of</strong> the Knee: When Things Go Wrong<br />
• Consequences <strong>of</strong> Intra-Articular Bleeding in<br />
<strong>Hemophilia</strong>: Science to Clinical Practice and Beyond<br />
• Paediatric Issues: Differences Between Developed<br />
and Developing Countries in <strong>Hemophilia</strong> Care<br />
LABORATORY SCIENCES SESSIONS<br />
• Difficulties and Pitfalls in the Laboratory Diagnosis<br />
<strong>of</strong> Bleeding Disorders<br />
• Standards and Monitoring Treatment<br />
• Genetics <strong>of</strong> Hemostasis<br />
• Global Hemostasis and Point <strong>of</strong> Care Testing<br />
NURSES’ SESSIONS<br />
• RBD: Familiar Name, Rare Disorder<br />
• Inhibitors: A Nurse’s Challenge<br />
• Nursing Beyond the Treatment Centre<br />
• <strong>Hemophilia</strong> Nursing in the Surgical Setting<br />
PSYCHOSOCIAL SESSIONS<br />
• Adherence<br />
• Coping Strategies<br />
• Ethical Issues<br />
• Parents Empowering Parents: A Global Perspective<br />
DENTAL SESSIONS<br />
• MTE: Challenges <strong>of</strong> Ageing Population<br />
• Preventive and Therapeutic Management <strong>of</strong> Oral<br />
and Dental Disease<br />
• Surgical Management <strong>of</strong> Oral and Dental Problems<br />
7 WFH Medical Advisory Board News • May 2012
50<br />
YEARS OF<br />
ADVANCING<br />
TREATMENT<br />
FOR ALL<br />
Join the <strong>World</strong> <strong>Federation</strong><br />
<strong>of</strong> <strong>Hemophilia</strong> at the WFH<br />
2012 <strong>World</strong> Congress in<br />
Paris as we mark 50 years<br />
serving the global bleeding<br />
disorders community.<br />
Together, we will<br />
Close the Gap.<br />
CLOSE GAP<br />
Campaign 2012 • 2014