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WFH 2023 Comprehensive Care Summit: New Developments in Bleeding Disorders and MSK

The WFH 2023 Comprehensive Care Summit: New Developments in Bleeding Disorders and MSK will take place from May 10 to 12, 2023 in Buenos Aires, Argentina. The global summit will encompass the biennial International WFH Musculoskeletal (MSK) Congress, and will include MSK, medical and multi-disciplinary tracks—all centering around people with bleeding disorders. The Comprehensive Care Summit will bring together MSK and medical professionals as well as bleeding disorder patients and community advocates to discuss new medical research and discoveries, and assess problems and issues present in the management of bleeding disorders in all parts of the world. This summit is open internationally to all participants.

Also available in: English Français Español

Join us online at #MSKCongress

WFH 2023 Comprehensive Care Summit [email protected]

REGISTRATION INFORMATION

Registration and housing for the 2023 WFH Comprehensive Care Summit are now open to all.  Take advantage of our early-bird discount and register before December 16, 2022, to save!

The safest way to register is using our easy, efficient, and secure online system. Simply follow the steps to register online and you will receive an email confirmation within 24 hours.
REGISTRATION FEES Registration fees are in USD. Rates are applicable if both registration and payment are received before the deadlines.
EARLY REGULAR ON-SITE
Before December 16, 2022 Before May 4, 2023
Delegate $780 $920 $1,075
Industry $780 $920 $1,075
PAMs (professions allied to medicine) $415 $515 $615
Community advocate, NMO staff, student $200 $300 $400
PWBD $100 $150 $200
The registration fee includes:
  • Access to all sessions
  • Entrance to the exhibition and poster area
  • Electronic access to final program
  • Daily coffee breaks
  • Daily lunch
  • Certificate of attendance (by request)
  • CME credits (if applicable)

PASSPORT TO THE WORLD

Passport to the World fees only apply to citizens who reside in a qualifying country. See the full list of eligible countries here.
PASSPORT TO THE WORLD – REDUCED FEES* Registration rates are quoted in USD and expire at midnight Eastern Standard Time (EST).
EARLY REGULAR ON-SITE
Before December 16, 2022 Before May 4, 2023
Delegate (physician) $390 $460 $460
PAMs (Professions allied to medicine) $390 $460 $460
Community Advocate, NMO staff $75 $75 $105
PWBD $75 $75 $105

Important information*

  • The above fees cannot be combined with any other discount
  • Passport to the World fees only apply to citizens who reside in a qualifying country. See the full list of eligible countries here.
  • Registrants will need to provide proof of citizenship during the registration process (passport or national ID is accepted)
  • The discount can only be applied at the time of registration. Discounts will not be issued retroactively once a registration is completed.
  • The Passport to the World fee only applies to doctors, HCPs, NMO staff, volunteers, people with a bleeding disorder, and family members. The fee does not apply to students or industry staff.
  • Please contact [email protected] for more information

Registration changes and cancellations

Any change or cancellation of your registration must be sent in writing to [email protected]. A confirmation of the change or cancellation will be forwarded to you. All requests are subject to the following conditions:

  • No name changes are permitted.
  • Until Friday, March 10, 2023, a refund equivalent to 75% of the paid registration fee will be granted . After Friday, March 10, 2023, no refunds will be granted.
  • Requests for refunds with regards to incorrect registration payments or incorrect category selection will not be considered
  • Non-attendance will be considered to be a cancellation on the day of the event and will incur a 100% cancellation fee

TREATMENT ROOM

During the WFH 2023 Summit, a hemophilia/bleeding disorders treatment room will be installed at the Hilton Buenos Aires Hotel.  The treatment room will have specialized doctors and nurses available to assess emergency situations related to bleeding disorders and assist with infusions of concentrates, from May 9–13 May, to provide appropriate treatment and counsel to patients presenting with an acute or subacute bleeding episode.

Opening Hours:

DATE TIME PLACE
Tuesday, May 9 14:00 – 20:00 ART Hilton Hotel Suite # to be confirmed
Wednesday, May 10 08:00 – 18:00 ART
Thursday, May 11
Friday, May 12
Saturday, May 13 08:00 – 14:00 ART

Emergencies and medical problems unrelated to a bleeding disorder

If your medical problem is not related to a bleeding disorder, we suggest that you contact a doctor through the hotel/accommodation, your travel insurance, or visit the emergency room of one of the local hospitals:

General Hospital of Acute Dr. Cosme Argerich
Address: Pi y Margall 750
Free attention 24 hours
Distance: 15 minutes by car

The Emergency Services available are:

  • SAME (call 107) public
  • ECCO (contact Hilton hotel reception)

For a complete list of hemophilia treatment centers in Argentina, please visit the Hemophilia Foundation website (in Spanish) https://www.hemofilia.org.ar/lugares_de_atencion

FAQ

Q     Who can attend the Summit?

A     This in-person global Summit is open to all participants.

Q     What does my registration fee include?
A     All in-person registration categories, include the following: 

a.    Access to all sessions 

b.    Entrance to the poster area 

c.    Daily coffee breaks 

d.    Daily lunch 

e.    Certificate of attendance (by request) 

f.    CME credits (if applicable) 

Q     AIFA permit agency:

A     AIFA Authorization for Italian pharmaceutical companies:

  • Atlante Viaggi has been appointed to manage all the legal documents required by Italian Legislative Order n. 219/2006 Art.124 comma 2:
  • Atlante Viaggi Italia Srl
  • via Bandello 1
  • 20123 Milano
  • [email protected]
Q     How do I register a group?

ACompanies and organizations intending to register a group of 10 people may follow a special group registration procedure.

PUBLICATION

The WFH 2023 Comprehensive Care Summit book of abstracts is now available! To view the supplement in the Haemophilia Journal, please use this link.

CALL FOR ABSTRACTS

The WFH 2023 Comprehensive Care Summit Program Committee invites abstract submissions for free paper and poster presentations. Abstracts discussing solutions and interventions related to addressing the summit tracks are highly encouraged. We encourage submissions from allied health professionals in academic and community settings and from community organizations, health care providers / organizations and from students who are doing new and innovative work.

Selected abstracts from all disciplines will be published as a supplement in the Haemophilia Journal. We look forward to your submissions!

The call for abstracts will close on February 6, 2023.

To submit an abstract please click here.

Submit your abstract today and you may be eligible for one of the awards below. Read on for more details:

Christine Lee Haemophilia Journal Award

All disciplines eligible – medical, multidisciplinary, and musculoskeletal

Established in 2012 by the World Federation of Hemophilia (WFH) and Wiley, the Christine Lee Haemophilia Journal Award is given in recognition to the top young researcher (graduate student or postdoctoral fellow) who has submitted a highly rated abstract as a primary author and presenter in any discipline involving hemophilia or another related bleeding disorder. Award winners receive ₤3,000 and a three-year online personal subscription to the Haemophilia journal.

Henri Horoszowski Award

Musculoskeletal field only

The best-scoring musculoskeletal abstracts will be eligible for the Henri Horoszowski Award. This prize is given in recognition to a top young researcher who is the primary author and presenter. The selection committee will choose the best oral free paper presentation and the winner will be announced at the MSK committee’s Annual General Meeting on Friday, May 12, 2023.

CME CREDITS

The WFH 2023 Comprehensive Care Summit: New Developments in Bleeding Disorders and MSK, Buenos Aires, Argentina, 10/05/2023-12/05/2023 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) with 13 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in the educational activity.

Through an agreement between the Union Européenne des Médecins Spécialistes and the American Medical Association, physicians may convert EACCME® credits to an equivalent number of AMA PRA Category 1 CreditsTM. Information on the process to convert EACCME® credit to AMA credit can be found at www.ama-assn.org/education/earn-credit-participation-international-activities.

Live educational activities, occurring outside of Canada, recognised by the UEMS- EACCME® for ECMEC®s are deemed to be Accredited Group Learning Activities (Section 1) as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada.

Each participant can only receive the number of credits he/she is entitled to according to his/her actual participation at the event once he/she has completed the feedback form. Cf. criteria 9 and 23 of UEMS 2016.20.

Please find below the breakdown of maximum ECMEC®s credits available per day:

  • 05.20234.00
  • 05.20235.00
  • 05.20234.00

The EACCME® awards ECMEC®s on the basis of 1 ECMEC® for one hour of CME with a maximum of 8 ECMEC®s per day. Cf. Chapter X of UEMS 2016.20.

To claim CME credits, participants will need to attend the eligible sessions taking place during the summit days from May 10-12, 2023, as well as complete the evaluation form for each of these sessions.

Eligible sessions are marked in the program with the following symbol

Participants will need to sign in at the door when joining each eligible session.

Evaluations will be available at the conclusion of each session via the event’s APP

Deadline to request a certificate was June 6, 2023

For more information, please contact [email protected].

AGENDA

The WFH 2023 Comprehensive Care Summit will include more than 30 hours of continuing educational sessions across three tracks—musculoskeletal, medical, and multidisciplinaryall focusing on topics related to the latest developments in bleeding disorders and MSK treatment and care. The global summit will feature world-class plenary and session speakers, interactive sessions, panel discussions and innovative industry symposia.

INTERACTIVE PROGRAM

Calendar





07:30 – 08:30
MSK WORKSHOP: POCUS for Assessment - Interactive workshop
08:45 – 09:15
OPENING PLENARY: Welcome Remarks
09:15 – 09:45
MULTIDISCIPLINARY PLENARY: Ageing
10:00 – 11:00
COMPREHENSIVE CARE PLENARY OVERVIEW: Comprehensive Care of Ageing
  • Physician and hemophilia A perspective 
  • Patient perspective
  • Nurse perspective
  • Psychosocial perspective
  • Physiotherapist perspective
11:30 – 12:30
MSK SESSION: Musculoskeletal surgical procedures for patients with bleeding disorders
  • Major surgical intervention in Hemophilia
  • Use of emicizumab for minor surgery
  • MSK surgeries for patients with inhibitors
11:30 – 12:30
MEDICAL SESSION: Prophylaxis
  • Global overview of prophylaxis with factor replacement
  • Global overview of prophylaxis with factor VIII-mimetic
14:00 – 15:00
MULTIDISCIPLINARY SESSION: Education for patients and families
  • What’s normal/not normal
  • Education available; Standardization of resources
  • Managing expectations for clinicians & patients with novel therapies
14:00 – 15:00
MEDICAL SESSION: How to manage hemostasis during major surgery
  • Emicizumab – clinical trials
  • Fitusiran – clinical trials
  • Emicizumab
15:30 – 16:30
MSK SESSION: The musculoskeletal manifestations of bleeding disorders
  • Muscle bleeds from a surgeon perspective (Surgery and pseudotumor)
  • Preventing muscle bleeds, is it possible?
  • Heterotopic Ossification
15:30 – 16:30
MULTIDISCIPLINARY SESSION: Comprehensive care models for women & girls with bleeding disorders
  • Delivering combined care
  • Optimal care for WGBD, reclassification of carriers
  • Challenges in diagnosis of WGBD
09:15 – 09:45
MSK PLENARY: Advances in arthropathies/ bone health at different age group
10:00 – 11:00
MSK PLENARY OVERVIEW: The art of treating synovitis
  • Chemical vs radioactive
  • PRP
  • Hyaluronic acid
  • Surgical intervention for synovitis
11:30 – 12:30
MEDICAL SESSION: VWD
  • Prophylaxis
  • Application of VWD guidelines – lower income setting
  • Aging, angiodysplasia
11:30 – 12:30
MULTIDISCIPLINARY SESSION: Lessons learnt from isolation
  • Mental health/psychosocial
  • Experience from local HTC – telehealth & physio program
  • Pros to isolation
  • Cons to isolation
14:00 – 15:00
MSK SESSION: Regional focus - South America
  • Brazil: Experience in one centre
  • Colombia: Experience in one centre
  • Chile: Physiotherapy perspective, Telerehabilitation
  • Argentina: Experience in Ultrasound into clinical practical
14:00 – 15:00
MEDICAL SESSION: Management of women and girls with bleeding disorders
  • Management of gynecological bleeding
  • Management of pregnancy
  • Iron deficiency
15:30 – 16:30
MSK SESSION: Global interactive session from theory into practice
  • Therapies at different backgrounds
  • Assessment tools
  • Pain
  • Communication between different specialities
15:30 – 16:30
MULTIDISCIPLINARY SESSION: Relationships and Intimacy
  • Dental health and its impact on intimacy for women & men
  • Physiotherapist perspective
  • Psychologist perspective
16:45 – 17:45
MSK SESSION: Multiple joint arthropathies
  • Severe multiple joint arthropathies
  • Pain coping behaviour from an orthopedist perspective
  • The role of manual therapies
09:15 – 09:45
MEDICAL PLENARY: Transition to mild hemophilia
10:00 – 11:00
MEDICAL PLENARY OVERVIEW: Novel Therapeutics
  • Overview
  • Patient w/severe hemophilia on emicizumab perspective
  • Patient w/GT perspective
  • Changing role of the haemophilia team in the era of novel therapeutics
  • PT – Joint issues/ activity choice
11.30 – 12:30
MSK SESSION: The role of rehabilitation in the management of hemophilia
  • Self Rehabilitation
  • Gait Evaluation and Rehabilitation
  • Post surgical rehabilitation
11:30 – 12:30
MULTIDISCIPLINARY SESSION: Informed patient consent
  • Overview of consent
  • Panel discussion
  • Patient perspective
  • Geneticist perspective
14:00 – 15:00
MEDICAL SESSION: Gene therapy
  • Compare hemophilia A/B
  • Next generation transgene for hemophilia A
  • Next generation vectors Hem A/B
14:00 – 15:00
MSK SESSION: Football for patients with hemophilia
  • Factor coverage for increased activities
  • Balancing physical benefits of this sport versus the social impact of not participating
  • Sports – When to start/stop
15:30 – 16:30
MULTIDISCIPLINARY SESSION: New treatments: Additional considerations for patients
  • Increased inclusion of women in clinical trials
  • Inclusivity in clinical trials (underserved communities)
  • New therapies: when to advocate, how to choose when to advocate, cost
  • Mindset of entering into new treatments
15:30 – 16:30
MEDICAL SESSION: Preventing joint bleeds sequelae
  • Blood induced joint damage
  • Current management (hemostasis)
  • Therapy of blood induced joint damage lessons from other diseases
Pre-registration required
Simultaneous interpretation will be available in Spanish and Portuguese for the Multidisciplinary track and all Plenary Sessions.
Program is subject to change

SPEAKERS

CEO – Chief Executive Officer
Federación Mundial de Hemofilia,
Montreal, Canadá

TRAVEL

Buenos Aires is well-connected and easy to reach, with three airports, two bus stations, and a port and cruise terminal.

SkyTeam is our Official Alliance Network for air travel. Seamless air travel—and attractive airfares—are available via SkyTeam Global Meetings for the Summit. By booking and buying your airline ticket via the dedicated link below, you will benefit from exclusive discounts of up to 15% for both Business and Economy Class.

To book your air travel now, click here or visit www.skyteam.com/en/business-solutions/global-meetings and enter event ID 4555S.

Buenos Aires is served by three airports:

  • Ministro Pistarini International Airport, Ezeiza (EZE)

The biggest airport in Argentina is in Ezeiza, 32 km (20 miles) from the centre of Buenos Aires city. Most long-haul international flights arrive and depart from here, along with some domestic and regional flights. The journey from the airport to the centre of the city takes about 50 minutes.

  • Jorge Newbery Airport (also known as Aeroparque (AEP))

Located in the city itself, in the Palermo neighbourhood, this airport is within 25 minutes of the main hotels in Buenos Aires. It serves mainly domestic flights and flights to neighbouring countries.

  • El Palomar (EPA)

Located 18km (11 miles) from the city, El Palomar Airport began serving a range of low-cost domestic flights to destinations throughout Argentina in 2018.

Taxis are readily available at all three airports.

Private transfers can be booked in advance or on arrival. Tienda León runs buses from Ezeiza airport to its base in Puerto Madero, in the center of Buenos Aires city.

All three airports are served by public bus lines, and there is also a train station at el Palomar. Note that services can be crowded at peak times and there is little space for luggage. You’ll need a SUBE travel card to use the bus or train. These are available from authorized stockists. You can use the “BA Cómo Llego” app to see how you can arrive at your destination via public transport.

The Terminal de Omnibus de Retiro, or Retiro bus station provides hundreds of bus services to destinations in Argentina and other Latin American countries. Long-distance bus travel is common in Argentina and most bus companies offer very comfortable “cama-ejecutivo” (executive bed) class seats, and often provide food on long-distance services. Dozens of companies operate from the coach station. Tickets can be bought at the booths on the upper floor, at authorised vendors in the city, or online. Assistance can be obtained at the Tourist Assistance Centre at unit 83.

There are regular ferry services between Buenos Aires and Montevideo and Colonia de Sacramento in Uruguay. The ferry terminals in Buenos Aires are in Puerto Madero and La Boca. The following companies run services:

Buquebus

Colonia Express

Information taken from the Buenos Aires Tourism site

Entry and departure requirements can change at any time, consult the following for the most up to date travel requirements: Migraciones | Argentina.gob.ar

ABOUT BUENOS AIRES

Buenos Aires is cosmopolitan city full of passion and culture. Its combination of rich architectural and cultural heritage, modern creative energy, electric nightlife, unique traditions, vibrant arts scene, large parks, and warm, friendly people make it one of the world’s most exciting capitals.

There are many reasons to visit, which is why the city has been repeatedly voted the best in Latin America by users of TripAdvisor.

With average temperatures of around 18ºC (64°F), Buenos Aires is blessed with a temperate and sunny climate, making it a great destination at any time of the year.

Spring and autumn are the rainiest seasons, and the Summit is taking place during Argentina’s autumn season. Rains tend to be light, although an umbrella may be advisable.

ACCOMMODATION

The WFH 2023 Comprehensive Care Summit is taking place at the  Hilton Buenos Aires  hotel in the lovely Puerto Madero district.

All hotel rooms: SOLD OUT.

City tax: Due to government regulations, starting on March 1st, 2020, non-Argentinean residents will be charged a USD 1.50 per person per night city tax fee.

VAT: VAT, currently 21%, will be added to hotel reservations to those who identify as residents of the Argentine Republic.

The hotel booking page will be available until April 5, 2023. After April 5, 2023, hotel rooms are subject to availability and rates cannot be guaranteed. Please send an email to [email protected] to check availability after April 5, 2023.

The WFH will charge your credit card with a non-refundable deposit equal to one nights’ accommodation. The balance will be charged sixty (60) days prior to the event on March 10, 2023. For cancellations received after March 10, 2023, no refunds will be granted.

If you are unable to provide a credit card guarantee you will be invoiced for a deposit equal to 100% of your total accommodation cost. For cancellations before March 10, 2023, a refund will be issued one month after the Congress, less an administrative fee equal to one night’s accommodation. For cancellations received after March 10, 2023, no refunds will be granted.

Any change or cancellation of your registration must be sent in writing to [email protected]. A confirmation of the reservation change or cancellation will be forwarded to you. All requests are subject to the following conditions:

  • No name changes are permitted. All name changes will be subject to the cancellation policy. Please do not contact the hotel directly.
  • For cancellations received after March 10, 2023, no refunds will be granted
  • Should you need to check out earlier than planned, no refunds will be granted

A group reservation consists of ten (10) or more rooms. One contact person should be designated to act as the group coordinator and be responsible for all correspondence with the WFH Housing Manager.  If you wish to book a group reservation, please send an email to [email protected], specifying the number of rooms required per day.  Please note that hotel blocks are assigned on a first-come, first-served basis.

The required deposit may be made by credit card (Visa or Mastercard) or wire transfer. From April 5, 2023, only payments by credit card will be accepted. Any inquiries or requests for additional information, modifications or cancellations to room reservations should be addressed to the WFH Housing Bureau in writing. Please do not contact the hotel directly.

SPONSORS

The WFH would like to thank our WFH 2023 Comprehensive Care Summit sponsors for their continued support.

Platinum

 

Supporter

For all inquiries, please contact:

Danielle André,

WFH Senior Congress and Meetings Manager, Exhibitions, World Federation of Hemophilia

Tel +1 (514) 394-2820

E-mail: [email protected]

EVENT NEWS

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Also available in: Français Español

Disclaimer

The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.

Fraud Alert

Unauthorized solicitations – Warning

The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.

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Hemophilia Alliance

Recognizing that training women leaders ensures the diversity our community need to thrive; the Hemophilia Alliance has been a longtime supporter of the Susan Skinner Memorial Fund. They deepened their engagement with the global community through the establishment of the Travel Grant Program, which allows US-based multidisciplinary healthcare professionals the opportunity to attend WFH global training workshops. The wealth of experience and perspective attendees bring back home to their communities helps patients across the country. Their patience and support as we grappled with changing norms in these challenging times gave us the flexibility to meet our community’s needs with revamped programming.

India - Mumbai

Year of IHTC designation: 2000

National Institute of Immunohaematology (ICMR) and KEM Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Nursing
  • Orthopedic care
  • Physiotherapy

India - Vellore

Year of IHTC designation: 2000

Christian Medical College, Vellore

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics with antenatal diagnosis
  • Nursing
  • Musculoskeletal management – physical and occupational therapy with physiatry
  • Orthopedic care and surgery
  • Blood banking
  • Dental care
  • Psychology/Social services
  • Antenatal diagnosis

Singapore - Singapore

Year of IHTC designation: 2002

Singapore General Hospital Haemophilia Treatment Clinic

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis
  • Nursing
  • Dental care
  • Orthopedic care (no surgeries)
  • Physiotherapy
  • Psychology

Senegal - Dakar

Year of IHTC designation: 2016

Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Blood banking
  • Physiotherapy

Russia - Moscow and St. Petersburg

Year of IHTC designation: 2010

National Medical Research Center of Hematology of the Russian Academy of Medical Sciences

Areas of Specialty

  • Adult hematology
  • Nursing
  • Orthopedic surgery

Netherlands - Utrecht

Year of IHTC designation: 1996

Van Creveldkliniek
University Medical Centre Utrecht

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hematology
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy/Occupational therapy
  • Psychology and social services

Japan - Nara

Year of IHTC designation: 1998

Nara Hemophilia Centre
Nara Medical University

Areas of Specialty

  • Adult and pediatric hematology
  • Dental care
  • Laboratory diagnosis and Molecular genetics
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy

Italy - Milan

Year of IHTC designation: 1972

Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico

Areas of Specialty

  • Adult and pediatric hematology
  • Blood banking
  • Dental care
  • Diagnostic assessment of platelet functional defects
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • Psychology and social services

Israel - Tel Hashomer

Year of IHTC designation: 1993

National Hemophilia Center, Tel Hashomer
Sheba Medical Center

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic surgery
  • Nursing
  • Physiotherapy
  • Dental care
  • Laboratory diagnosis (not genetics)
  • Psychology

France - Paris

Year of IHTC designation: 1972

Paris Haemophilia Centre (Necker (N) and Kremlin Bicêtre (KB) Hospitals)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Dental care
  • Orthopedic care and surgery
  • Physiotherapy
  • Psychology and Social services

Spain - Madrid

Year of IHTC designation: 2018

Hospital Universitario La Paz

Areas of Specialty

  • Adult and pediatric hematology
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

Spain - Valencia

Year of IHTC designation: 1997

Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • Blood banking
  • Psychology and Social services

Egypt - Cairo

Year of IHTC designation: 2015

Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Molecular genetics
  • Blood banking
  • Physiotherapy

Canada - Toronto

Year of IHTC designation: 2018

University of Toronto Hemophilia Centres
St. Michael’s Hospital

Areas of Specialty

  • Adult hematology services
  • Pediatric hematology services
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

Brazil - Campinas, SP

Year of IHTC designation: 2008

Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and molecular genetics
  • Nursing
  • Dentistry
  • Orthopedic care and surgery
  • Physiotherapy

Belgium - Brussels

Year of IHTC designation: 2013

Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis
  • Orthopedic care and surgery
  • Physiotherapy

Austria - Vienna

Year of IHTC designation: 1972

Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology

Areas of Specialty

  • Adult and pediatric hematology

Australia - Melbourne

Year of IHTC designation: 2005

Ronald Sawers Haemophilia Treatment Centre

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Dental care
  • Blood banking
  • Psychology
  • Social work

Argentina - Buenos Aires

Year of IHTC designation: 1974

Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)

Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)

Areas of Specialty

  • Adult and pediatric hematology
  • Physiotherapy
  • Dental care
  • Orthopaedic care and surgery
  • Laboratory diagnosis and genetic diagnosis
  • Nursing
  • Psychology
  • Social services

South Africa - Johannesburg

Year of IHTC designation: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Dental care
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic surgery
  • Physiotherapy

Sweden - Malmö

Year of IHTC designation: 1976

Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Blood banking (on request)
  • Dental care and surgery
  • Laboratory diagnosis and genetics
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy

Hemophilia of Georgia

Hemophilia of Georgia has stood with us for over three decades, playing an early role in distributing donated factor via the WFH Humanitarian Aid program. Our relationship has deepened over the years as they continued to support this program and came on board as a founding Chapter Challenge champion in 2016. Their belief in educating future leaders is clear in their investment in the Youth Leadership Workshops, which has led to the training of over 50 young adults. They also support workshops devoted to educating providers and patient leaders on how to collect and use data to advocate for better patient care. Their staff generously volunteer their time as trainers and as well as serving on various committees.

WFH President's Award - Recipients

National Bleeding Disorders Foundation

The National Bleeding Disorders Foundation helps advance our mission on several fronts. They inspire others to follow their lead as a founding champion of the NHF Chapter Challenge. Their commitment to equality of access is demonstrated in their support of the Cornerstone Initiative, which lays the foundation for care in the world's most underserved regions, as well as programs that aim to raise awareness and improve care of women with bleeding disorders and those with von Willebrand disease. We also benefit from their steadfast engagement with various programs including the WFH Twinning Program and their individual leaders’ contribution to our leadership and committees.

Legacy Gift

Do you sometimes wish you could do more? A bequest is a simple way for you to make a significant gift without changing anything about your financial security and lifestyle today. Your legacy will sustain care for the generations to come.

Download these sample clauses to give to your legal advisor.

We understand if you prefer to remain anonymous, but we would be very honoured if you would let us know of your intentions so that we may thank you personally. We would also be happy to answer any questions you may have or give you additional information. Please contact Jennifer Laliberté at 514‑875‑7944 ext.2822 or [email protected].

Disclaimer

The information on the WFH USA website is provided for general information purposes only. The WFH USA does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH USA recommends that you contact your physician or local treatment centre. Before administering any products, the WFH USA urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH USA does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH USA discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH USA social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH USA recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH USA. The WFH USA is not responsible and assumes no liability for the content of any linked websites.

Website privacy policy

The WFH USA does not collect personally identifying information about you when you visit our site, unless you choose to provide such information to us. Providing such information is strictly voluntary. This policy is your guide to how we will handle information we learn about you from your visit to our website.

Use of links

Throughout our website, we provide links to other servers which may contain information of interest to our readers. We take no responsibility for, and exercise no control over, the organizations, views, or accuracy of the information contained on other servers. When linking to the WFH USA, we request that you ensure that there are no associated connections for commercial purposes. Any official use of the name WFH USA or the use of its logo needs to be approved by the WFH USA. If you have a link you’d like us to consider adding to our website, please send an email to [email protected] with the subject “Link request.”

Use of text and images

All information, photographs, graphics, and other material on this website are protected by copyright. While users of this website may use the content for personal, non-commercial use, none of the content of this website can be modified, translated, transferred or sold, copied, reproduced, published, or distributed, in whole or in part, without the prior written consent of the WFH USA. To view a copy of the WFH USA’s permissions guidelines, click here.

The WFH USA encourages the dissemination of its information and welcomes proposals on the reprinting, redistribution, and translation of its materials. If you would like to publish information that you find on our website, please send your request to [email protected].

Accessibility

If you have suggestions on how to make the site more accessible, please contact us at [email protected].

Opt-Out or Change Your Contact Information

Our website provides users the opportunity to opt-out of receiving communications from us through a special online form or via the communication they have received. You may, at all times, choose to receive which communications within the organization you can receive or none at all. You may also update your contact information previously provided to us via another online form.

Questions about our policies

If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you can contact us at [email protected].

Fraud alert

Unauthorized solicitations – Warning

The WFH USA has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH USA staff or falsely stating that they are associated with the WFH USA. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH USA, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH USA emails come from @wfhusa.org or @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH USA at [email protected] or call 1-877-417-7944.

International Award for Outstanding Service - Recipients

International Lifetime Achievement Award - Recipients

Previous years

2012Christine Lee
United Kingdom
2006Dr. Bruce Evatt
United States

International Healthcare Volunteer Award - Recipients

Previous years

2012 Piet de Kleijn
The Netherlands
2010 Dr. Mammen Chandy
India
2008 Dr. Man-Chiu Poon
Canada
2006 Dr. Norma de Bosch
Venezuela
2004 Dr. Parttraporn Insarangkura
Thailand

Dr. Carol K. Kasper
United States

Thailand - Bangkok

Year of IHTC designation: 1984

International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University

Areas of Specialty

  • Adult and pediatric hematology
  • Blood banking
  • Dental care and surgery
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • Psychology and social services

Twins of the Year Awards

2022 Amman (Jordan) – Dublin (Ireland)
2021 Addis Ababa (Ethiopia) – Minneapolis (U.S.A) and
Tehran (Iran) – Milan (Italy)
2020 Aluva (India) – Newcastle (UK)
2019 Yogyakarta / Solo (Indonesia) – Utrecht (Netherlands)
2018 Abidjan (Ivory Coast) – Brussels (Belgium)
2017 Santa Cruz de la Sierra (Bolivia) – Buenos Aires (Argentina)
2016 Kampala (Uganda) – London (UK)
2015 Varna (Bulgaria) – Bonn (Germany)
2014 Arequipa (Peru) – Los Angeles (USA)
2013 Davangere (India) – Liverpool (UK)
Ludhiana (India) – Detroit (USA)
2012 Hanoi (Vietnam) – Melbourne (Australia)
2011 Manado (Indonesia) – Utrecht (Netherlands)
2010 Delhi (India) – Winnipeg (Canada)
Yaoundé (Cameroon) – Geneva (Switzerland)
2009 Chisinau (Moldova) – Warsaw (Poland)
Colombo (Sri Lanka) – Vellore (India)
2008 Gaborone (Botswana) – Philadelphia (USA)
2007 Vientiane (Laos) – Brest (France)
Damascus (Syria) – Montpellier (France)
2006 Lima (Peru) – Fort Worth (USA)
2005 Yerevan (Armenia) – Minneapolis (USA)
Casablanca (Morocco) – Caen (France)
2004 Beirut (Lebanon) – Geneva (Switzerland)
Santo Domingo (Dominican Republic) – Caracas (Venezuela)
2003 Cairo (Egypt) – Knoxville (USA)
2002 Moscow (Russia) – Liverpool (UK)
Panama – Valencia (Spain)
2001 Bangalore (India) – St. Louis (USA)
2000 Pune (India) – Bradford (UK)
1999 Montevideo (Uruguay) – Buenos Aires (Argentina)
Tianjin (China) – Calgary (Canada)
1998 Plovdiv (Bulgaria) – Bonn (Germany)
1997 Bogota (Colombia) – Los Angeles (USA)
Tartu (Estonia) – Stockholm (Sweden)
1996 Timisoara (Romania) – Munich (Germany)
Riga (Latvia) – Munster (Germany)
1995 Klaipeda (Lithuania) – Malmo (Sweden)
1994 Bratislava (Slovakia) – Tel Hashomer (Israel)

Pietrogrande Prize

2023 Nicholas Goddard
United Kingdom
2021 Axel Seuser
Germany
2019 Dr. Adolfo Llinás
Colombia
2017 Pamela Hilliard
Canada
2015 Kathy Mulder
Canada
2013 James Luck
United States
2012 Piet de Kleijn
The Netherlands
2011 Dr. Lily Heijnen
The Netherlands
2010 Dr. Horacio Caviglia
Argentina
2009 Jerome D. Wiedel
United States
2008 Dr. Federico Fernández-Palazzi
Venezuela
2007 Michael Heim
Israel
2006 Brenda Buzzard
United Kingdom
2005 Dr. Marvin Gilbert
United States

Henri Horoszowski Award

2021 Baolai Hua
Yangzhou College, Xuzhou Medical University
The effects of intra-articular injection of TNF-alpha Antagonists in treatment of haemophilic synovitis
2019 Maarten Eerdekens
Belgium
Association between multi-segment foot kinetics and blood induced joint damage in adult patients with hemophilic ankle arthropathy
2017 Fabio Souza
Brazil
Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis
2015 SM Javd Mortazavi
Iran
Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure
2013 Lize F.D. van Vulpen
United States
A fusion protein of IL4 and IL10, is equally effective in protecting cartilage from blood-induced damage compared to the individual components
2012 Horacio Caviglia
Argentina
Pseudotumor Surgery in Haemophilia A patients: Comparitive results between inhibitor and non-inhibitor patients
2011 Nick Goddard
United Kingdom and
Monique van Meegeren
The Netherlands
Early onset administration of IL-4 and IL-10 prevents blood-induced cartilage damage in vitro
2010 Lydia Abad-Franch
Spain
Influence of an Aquatic Training Protocol on the Reduced Risk of Cardiovascular Morbidity and Mortality in a Hemophiliac
2009 Sebastien Lobet
Belgium
Impact of Hemophilia Ankle Arthropathy on Gait Disability: Analysis of Energetic and Mechanical Variables
2008 Jose Alberto Tlacuilo-Parra
Mexico
Bone Turnover Markers and Bone Mineral Density in Children with Hemophilia
2007 Natalie Jansen
The Netherlands
Protective Abilities of Interleukin-10 in Blood-induced Cartilage Damage
2006 Axel Seuser and E. Kusch
Germany
Multi-Center Study of Orthopedic Outcome of the Lower Extremities in 249 Children with Hemophilia
2005 Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders
The Netherlands
The Hemophilia Activities List: Final development and validation of a hemophilic-specific self-assessment questionnaire on functional abilities
2004 Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber
The Netherlands
Radiosynoviorthesis using YTTRIUM-90 results in adverse direct effects on cartilage: a human in vitro study
2003 Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman
Germany
How to advise young haemophiliacs to find the right sport? A new and safe algorithm
2002 James Luck, Jr. and Mauricio Silva
United States
Long-Term Review of Total Knee Arthroplasty
2001 Federico Fernández-Palazzi
Venezuela
Oxytetracycline Chlorohydrate: A new material for chemical synovial orthoses
2000 Horacio Caviglia
Argentina
Pseudotumours
1999 William J. Ribbans and J.L. Hicks
United Kingdom
Communication and Co-operation for the New Millennium – The Future of the Musculoskeletal Committee in the 21st Century
1998 Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero
Colombia
Chromic phosphate synoviorthesis without age restriction should be the first treatment option for chronic active hemophilic synovitis

International Frank Schnabel Volunteer Award - Recipients

Previous years

2012Martha Patricia Monteros Rincon
Mexico
2010Antonia Luque de Garrido
Venezuela
2008Jean Michel Bouchez
France
2006Yuri Zhulyov
Russia
2004Ashok Verma
India

Functional Scales

The outcomes of interest collected by the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and patient-reported outcomes.

The WBDR includes five functional scales as part of its extended data set:

WBDR hemophilia data sets

WBDR Minimal Data Set

The WBDR Minimal Data Set (MDS) is a set of data on demographics, diagnosis, symptoms and treatment which are collected on patients participating in the WBDR.

WBDR Extended Data Set

The WBDR Extended Data Set (EDS) is a larger set of data, with more details than the MDS, which includes questions on patient demographics, diagnosis, symptoms, treatment and burden of disease. The EDS can be used by hemophilia treatment centers to collect data on patients participating in the WBDR. The WBDR Extended Data Set (EDS), was added to the database in March 2019.

United States - Columbus, Ohio

Year of IHTC designation: 2018

Nationwide Children’s Hospital

Areas of Specialty

  • Dental care
  • Laboratory diagnosis
  • Nursing
  • Orthopedic care and surgery
  • Pediatric hematology services
  • Physiotherapy/occupational therapy
  • Psychology/social services

United States - Houston, Texas

Year of IHTC designation: 2000

Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Blood banking
  • Physiotherapy/ Occupational therapy
  • Psychology/Social services

United States - Los Angeles, California

Year of IHTC designation: 1970

Lifespan Orthopaedic Hemophilia Treatment Center at Luskin Orthopedic Institute for Children

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • Psychology/Social services

United States - New York, New York

Year of IHTC designation: 1993

Mount Sinai School of Medicine
Mount Sinai Medical Center

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Molecular genetics
  • Social services

United States - Rochester, Minnesota

Year of IHTC designation: 1974

Mayo (Rochester) Comprehensive Hemophilia Center, and International Hemophilia Training Center (WFH)
Mayo Clinic/Foundation and Mayo Medical School

Areas of Specialty

  • Adult and pediatric hematology
  • Blood banking
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • Psychology/ Social services

United States - San Diego, California

Year of IHTC designation: 2018

Hemophilia & Thrombosis Treatment Center
University of California San Diego

Areas of Specialty

  • Adult hematology
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

United Kingdom - London

Year of IHTC designation: 1970

Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy/Occupational therapy
  • Molecular genetics
  • Psychology/Social services

United Kingdom - Oxford

Year of IHTC designation: 1972

Oxford Haemophilia and Thrombosis Centre
Churchill Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Molecular genetics
  • Physiotherapy/Occupational therapy
  • Psychology and social services

United Kingdom - Sheffield

Year of IHTC designation: 1992

Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics

Our history

The WFH was established in 1963 by Frank Schnabel, a Canadian businessman born with severe hemophilia A. He believed that patient organizations could be much more effective—and do more to represent the interests of people living with bleeding disorders—if they worked together. The first WFH Congress was held in Copenhagen, Denmark, on June 25, 1963, and was attended by representatives from 12 countries. Now, the WFH and our global network of national member organizations (NMOs) represent the interests of people with hemophilia and other inherited bleeding disorders in 152 nations.