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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

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