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WBDRは、血友病患者（PWH）およびフォン・ヴィレブランド病（VWD）患者の標準化された臨床データを収集する唯一のグローバルレジストリです。このレジストリに参加している血友病治療センター（HTC）の大規模ネットワークにウェブベースのデータ入力プラットフォームを提供し、データの収集と管理を行っています。
WBDRは、この5年間、PWHのデータを収集してきました。2023年の初めには、世界血友病連盟（WFH）がWBDR VWDモジュールを立ち上げ、VWDの診断と管理、およびVWD患者の健康状態の転帰に関するデータを収集する初のグローバルレジストリを開設しています。WBDRのデータは、エビデンスに基づくアドボカシーや研究のため、そして臨床現場の改善を進める上で大変貴重です。
WBDRは、世界中の出血性疾患患者のケアを向上させる重要なデータ収集ツールです。
WBDRへの参加をご検討の場合、HTCは以下の基準を満たす必要があります。
貴HTCがWBDRへの参加にご興味をお持ちの場合は、WFH（[email protected]宛て）に電子メールを送付してください。現地機関または保健省から倫理審査の承認を取得する手順をご案内します。
HTCが倫理審査の承認を取得したら、データ入力を担当する予定の者は、患者登録開始前にWBDRのデータ入力トレーニングを受講しなくてはなりません。
International Data Integration Program（国際データ統合プログラム）では、既存の出血性疾患レジストリのリソースを集約し、既存の患者レジストリからWBDRへのデータ転送を推進することによって、現存のデータの有用性を最大限活用できるようになります。このプログラムは、自国のデータを提供しWBDRで示すことによって、この世界的な活動に参加することを希望する国が利用できます。詳細についてはWFH（[email protected]）へお問い合わせください。
WBDRに参加すれば、この重要なリソースの構築と将来の世界的な出血性疾患治療の改善に出血性疾患患者（PWBD）の皆さまが積極的な役割を果たすことができます。あなたがPWBDか介護者であり、WBDRへの登録に関心がおありでしたら、通院中のHTCに連絡を取り、WBDRへの参加について尋ねてみてください。
WBDRデータベースでは、人口統計、診断および臨床領域に及ぶ血友病とフォン・ヴィレブランド病（VWD）のデータセットを扱っています。
WBDRは、血友病のデータセットを対象として2018年に開設されました。2023年の初めにはVWDのデータセットが追加となり、VWD患者の登録が開始されました。このレジストリでは、5つの機能評価尺度と1つのQOL（生活の質）評価尺度を使用しています。
WBDRに保存するあらゆる患者情報は匿名化され機密保持の対象となります。Health Solutionsのデータ取扱い方針ガイドラインは、CEマーク（Conformité Européenne。EUの基準に適合していることを表示するマーク）と英国IGSoC（Information Governance Statement of Compliance［情報ガバナンス コンプライアンス声明］）基準をともに固守し、一般データ保護規則（GDPR）に準拠しています。
WBDR 2023 データ報告書には、血友病治療センター（HTC）119施設と44カ国の血友病患者およびVWD患者14,342名のデータが含まれています。WBDRのデータを発表物、出版物またはその他の研究資料の中で利用する場合は、WFHのクレジットを表示してください。
過去の報告書（英語のみ）：
WFHは、3種類のWBDRプログラムを提供し、HTCがWBDRデータを使用して品質データを収集し、調査研究を実施できるようにしています。
WBDRは、包括的なデータ品質認定（Data Quality Accreditation：DQA）プログラムを提供しています。このプログラムには、堅固なデータクリーニングや検証プロセスが含まれており、これによりデータの完全性、精度、整合性が強化されています。WBDRのデータ品質チームはすべてのHTCと協力して、収集されたデータの品質に関するトレーニングやフィードバックを行っています。
WBDR研究支援プログラム（Research Support Program：RSP）は、WBDR HTCが自身のWBDRデータを収集し、分析し、使用するよう、HTCへの動機づけや支援を促す目的で設計されています。データ収集経験の少ない国々がWBDRに参加し、研究やアドボカシーに自身のデータを使用できるよう勧めることを目標としています。
WBDR HTC資金援助プログラム（HTC Funding Program：HFP）は、低所得国および低中所得国のWBDR HTCでのデータ収集作業を支援するために資金提供する目的で設計されています。このプログラムでは、HTCの患者登録状況を改善し、入力データの品質と完全性が向上するよう支援することをめざしています。
WBDRでのデータ入力に関する詳細について、WBDRの参加HTCは以下の文書をご参照いただくことをお勧めします（英語のみ）。
myWBDR（マイWBDR）は、血友病および／またはフォン・ヴィレブランド病（VWD）であると診断され、世界出血性疾患レジストリ（WBDR）に登録された患者さんを対象として設計されたモバイルアプリです。使いやすいプラットフォームで、出血エピソード、痛みの程度、治療、EQ-5D-5LやPROBEの質問票による全般的健康状態を簡単に記録し、モニタリングすることができます。
何かご不明な点がございましたら、WBDRのよくある質問（FAQ）をご覧いただくか、WFH（[email protected]）へお問い合わせください。
WBDRチーム（[email protected]）へご連絡ください。
ご自身のデータの共有を快く受け入れてくださった出血性疾患患者の皆さま：世界中の出血性疾患患者さん（PWBD）のケアの質の向上にご協力いただきありがとうございます。
WBDR HTCの皆さま：個々のデータがWBDRのデータ品質基準に合致するよう参加HTCでご尽力くださっている皆さまに心より御礼申し上げます。
WFHは、当連盟がこの重要な活動を継続して展開できるよう多くの金銭的ご支援をくださいましたスポンサーの皆さまに、厚く御礼申し上げます。WBDRは、以下の皆さまから資金提供をいただいております。
Keep up to date on the latest developments in the bleeding disorders community, from medical advances to important events.
© 2024 World Federation of Hemophilia
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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.
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.
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.
National Hemophilia Center, Tel Hashomer
Sheba Medical Center
Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital
Singapore General Hospital Haemophilia Treatment Clinic
Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)
National Medical Research Center of Hematology of the Russian Academy of Medical Sciences
Van Creveldkliniek
University Medical Centre Utrecht
Nara Hemophilia Centre
Nara Medical University
Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico
National Institute of Immunohaematology (ICMR) and KEM Hospital
Christian Medical College, Vellore
Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital
Paris Haemophilia Centre (Necker (N) and Kremlin Bicetre (KB) Hospitals)
Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University
University of Toronto Hemophilia Centres
St. Michael’s Hospital
Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas
Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc
Hemofiliecentrum Leuven, University of Leuven
Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology
Ronald Sawers Haemophilia Centre
Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)
Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)
Hospital Universitario La Paz
Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital
International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University
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.
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.
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].
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.
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.
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.”
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].
If you have suggestions on how to make the site more accessible, please contact us at [email protected].
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.
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].
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.
| 2012 | Christine Lee United Kingdom |
| 2006 | Dr. Bruce Evatt United States |
| 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 |
Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital
Manchester Haemophilia Comprehensive Care Centre (Children’s and Adult’s)
Manchester Royal Infirmary and Manchester Children’s Hospital
Oxford Haemophilia Centre and Thrombosis Centre
Churchill Hospital
Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital
| 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) |
| 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 |
| 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 |
| 2012 | Martha Patricia Monteros Rincon Mexico |
| 2010 | Antonia Luque de Garrido Venezuela |
| 2008 | Jean Michel Bouchez France |
| 2006 | Yuri Zhulyov Russia |
| 2004 | Ashok Verma India |
The outcomes of interest collected in the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and quality of life. The quality of life scale, EQ-5D-5L, is part of the WBDR extended data set. It is available in more than 130 languages and in different modes of administration.
If you would like a different language, please email us at [email protected].
Amharic
Arabic (Algeria, Morocco, UAE)
English (Ghana, India, Jamaica, Kenya, Nigeria, and the Philippines)
French (Algeria, Belgium, and Morocco)
Hungarian
Malayalam
Nepali
Punjabi
Russian (Ukraine)
Serbian
Spanish (Argentina, Panama, Spain, and the U.S.A)
Swahili
Tagalog
Thai
Twi
Ukrainian
Urdu
Vietnamese
For more information, please visit: euroqol.org/eq-5d-instruments/eq-5d-5l-about.
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:
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.
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.
University of North Carolina Hemophilia & Thrombosis Center
Nationwide Children’s Hospital
Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston
Orthopaedic Hemophilia Treatment Center
Mount Sinai School of Medicine
Mount Sinai Medical Center
Mayo (Rochester) Comprehensive Hemophilia Center, and International Hemophilia Training Center (WFH)
Mayo Clinic/Foundation and Mayo Medical School
Hemophilia & Thrombosis Treatment Center
University of California San Diego
WFHは、重症血友病A患者であるカナダの実業家フランク・シュナーベル（Frank Schnabel）によって1963年に設立されました。シュナーベルは、患者団体が協力することでさらに効果的に、すなわち出血性疾患患者の利益を代表するためにもっと多くの活動ができると考えました。1963年6月25日にデンマークのコペンハーゲンで第1回WFH世界会議が開催され、12カ国の代表が出席しました。現在、WFHとNMOの世界的ネットワークは、147カ国の血友病その他の遺伝性出血性疾患患者の利益を代表しています。
