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世界血友病連盟(WFH)は、世界の出血性疾患コミュニティを招集し、現行の、あるいは新規の治療や医療を受ける機会の公平性を確保することで、世界的権利擁護支援活動の指導的役割を果たしています。また、世界や地域の権利擁護活動を生かして、政策、医療提供、必需品の調達に関連する各国の支援戦略を強化しています。

PACT

5年間の構想として導入された新たなWFH医療と治療へのアクセス供与( Path to Access to Care and Treatment:PACT)プログラムは、支援と診断を向上させ、遺伝性出血性疾患患者が持続可能なケアを受けられる機会を増やすようデザインされています。これは、トレーニング、教育、パートナーシップ、国内での取り組み、そしてエビデンスに基づく権利擁護支援活動によって達成可能となります。

ニーズ

出血性疾患コミュニティに属する患者に適切なケアを受ける機会を提供するにあたり、世界中の多くの国々が多くの課題に直面しています。実際に診断された血友病患者数と想定される患者数の差は、これまでに考えられていたものよりも大きく、現時点までに世界で血友病と確認された患者数は、想定される数字の3分の1にすぎません。PACTは、患者の全体像を把握するというニーズに応えることで、世界の出血性疾患コミュニティを支援することを目的としています。

PACTの目標

PACTプログラムが目指すところは以下のとおりです。

 

  • 新たに2万人の遺伝性出血性疾患患者を診断すること
  • 患者リーダーや医療提供者に対し、出血性疾患の支援、診断、管理、そしてエビデンスに基づく権利擁護支援活動に関するトレーニングや教育を提供し、医療へのアクセスを向上させること
  • 既存の国家的な出血性疾患治療プログラムを確立または拡大するための政府支援を増やすこと

プログラムの内容

このプログラムは、以下の3つの主な項目により実施されます。

PACT支援アカデミー(PACT Advocacy Academy)は、ケアの基本的概念と原理、治療や必要物品へのアクセス、医療経済学の概説、権利擁護支援プログラムの立案と実施など、エビデンスに基づく権利擁護支援キャンペーンを滞りなく実行するために必要な知識やスキルを、NMOのリーダーや患者支援者に提供します。

 

医療従事者に対しては、支援、診断、出血性疾患の管理に重点を置いたバーチャルトレーニングを年1回実施します。トレーニングの成果を継続的に評価し、新たなニーズや進捗度を判定します。

4、5年計画での個々のアクセスプランには、個別トレーニング、支援や権利擁護のキャンペーンに向けた現場サポートが含まれており、政府からの国家的支援を引き出します。これらのプログラムを最大限に成功させるために、主要な利害関係者(NMO、医療従事者、各国政府)の協力関係が育成されます。

 

対象となる国のNMOへの特定分野の専門家によるメンターシップ(指導体制)は、国のアクセスプランの実施を後押しします。このメンターシップ期間は、現地のニーズにより6カ月から4年となります。

WFHは、対象となる国のNMOに対して、WFH PACTプログラムの指導者となり、国のアクセスプランの実施を支援する特定分野の専門家ボランティアを募集しています。

目的

メンターシップの主な目的は、以下に示すテーマや組織力の分野において、NMOにガイダンスや専門知識を提供し、PACTによる国のアクセスプランの効果を最大限にすることです。

期間

指導期間は6カ月から4年間で、現地のニーズや指導者の都合により個別に設定されます。

専門分野

WFHは、以下のうち少なくとも1つの分野において豊富な経験と専門知識を持つ指導者を求めています

国家的な出血性疾患プログラムと医療提供

  • 国家的な出血性疾患(または血友病)プログラムの開発
  • 血友病または出血性疾患の全国評議会または委員会の設立
  • 国家的治療ガイドラインの策定
  • 血友病治療センターの開設

擁護支援と政府支援

  • 権利擁護支援キャンペーンの企画と実施
  • 権利擁護支援のためのデータ収集と利用
  • 医療経済学と医療技術評価の理解
  • 安全な治療と物品調達へのアクセスを改善すること
  • 利害関係者との関係の管理

NMOの組織力とリーダーシップ

  • ガバナンスおよびリーダーシップ育成の支援
  • 地域代表または支部など、NMOの組織的発展の強化
  • 戦略計画の策定
  • 事業計画の作成とプロジェクトサイクルの管理
  • コミュニケーション計画の策定
  • ボランティアの参加と維持
  • 資金調達と資源動員キャンペーンの実施

NMOの支援、教育プログラムおよびサービス

  • 新規出血性疾患患者を特定する活動プログラムの立案と実施
  • 支援や教育プログラムにおけるデジタルツールの使用
  • 以下に示すいずれかに関連するテーマ別プロジェクトの立案と実施
    • フォン・ヴィレブランド病に関する啓発と教育
    • 若者のリーダーシップと参画
    • 遺伝性出血性疾患の女性や女児に関連する課題の啓発と教育
  • その他の患者教育や医療教育、能力開発プログラムの立案と実施
  • 患者レジストリその他のデータ収集プログラムの開発

メンターシップの仕組み

PACTプログラムに指導者として参加申請した方は全員、確認書を受け取り、指導者候補のデータベースに追加されます。次いで、指導者の専門およびPACTプログラムの一環として現在実施されている国家プロジェクトのニーズを考慮し、マッチングが行われます。マッチングされると、指導者に確認の連絡をします。

 

次に、WFHのスタッフが指導者とNMOとの顔合わせの会合を主催し、メンターシップの目的や範囲について検討するとともに、両者の協力の意志を固めます。メンターシップが始まると、指導者とNMOはWFHに対し進捗状況を定期的に報告します。

 

以下は、指導者がNMOに対して行う支援の一例です。

 

  • メンターシップの範囲として合意した特定領域に関するガイダンスと助言を提供する。
  • さまざまな文書、指針、ガイドライン(国またはNMO内部)を精査しフィードバックを提供する。
  • 特定分野の専門家として、会合やイベントに出席する。

WFH PACTプログラム指導者への応募要領

上記の領域での経験や専門知識をお持ちの方は、指導者応募用紙にご記入いただき、履歴書とともに [email protected] にお送りください。

世界や地域のトレーニングおよび会議(2022年開始)は、エビデンスに基づく権利擁護支援に関する成功事例と経験をコミュニティのリーダー間で共有するためのフォーラムとして機能します。こういった共同フォーラムでは、NMOリーダー、医療従事者、政府代表者が一堂に会し、利害関係者間の対話を進め、参画を増やします。

参加国

PACTのオンライン・トレーニングや教育、世界・地域会議の内容は、どの国からも閲覧することができますが、国のアクセスプランの作成や実施については20カ国が選定されています。この国々は、以下の基準により選定されています。

 

  • 人口統計および経済指標
  • 現地のリーダーシップの強さと意欲
  • その国の医療制度における出血性疾患医療のレベル
  • 全体的な成功の可能性

 

PACTには、以下の国々が登録されています。アルゼンチン、バングラデシュ、ボリビア、ブラジル、中国、コスタリカ、エジプト、インド、インドネシア、ケニア、マレーシア、メキシコ、ネパール、ニカラグア、ナイジェリア、パキスタン、パレスチナ、セネガル、ベトナム、ザンビア。

PACTは、以下に示す企業から資金提供を受けています。

ビジョナリー・パートナー
リーダーシップ・パートナー
提携パートナー

PACT支援アカデミー

PACT支援アカデミーは、エビデンスに基づく権利擁護支援キャンペーンを成功させるために必要な知識やスキルを、NMOリーダーや患者支援者に提供します。8カ月のコースには以下のトピックが含まれています。

  • 出血性疾患、医療の原則、権利擁護支援における重要概念
  • 治療製剤、調達モデル、提供物資の重要概念
  • 医療経済学と医療技術評価の導入
  • 権利擁護支援スキルとキャンペーンのデザイン

PACT支援アカデミーは毎年開催され、第一期の開始は2022年1月です。初年度のPACT支援アカデミーのコースは英語で実施され、世界各国から20〜30名の参加を予定しています。今後は、英語以外の言語による実施も検討中です。

 

このコースは、WFH、ニューヨーク大学ロバートFワーグナー公共事業大学院(New York University Robert F. Wagner Graduate School of Public Service:NYU Wagner)および専門家ワーキンググループの協力で開設されています。

 

各トピックを6〜8週間にわたり学習する予定で、これには1つの自習用オンライン学習モジュールおよび2つのライブ形式の双方向ウェビナーが含まれています。オンラインプラットフォームにより、参加者は進捗状況の確認、過去のモジュールの参照、他の参加者や指導者との意見交換が可能です。

 

コース開催期間中、参加者は自身が所属するNMO向けに実際に権利擁護支援プロジェクトを開始する必要があります。PACT諸国からの参加者の場合、このプロジェクトはPACTによる国のアクセスプランと整合していなければなりません。

 

参加者には、WFHとNYU Wagnerから修了証が授与されます。

 

PACT支援アカデミーの参加者は、毎年公募により選定されます。第一期の選考手続きは、すでに終了しています。

 

PACTプログラムについてご質問がある場合には、WFH([email protected])にお問い合わせください。

エビデンスに基づく権利擁護支援

WFHデータ収集プログラムを介して収集されたデータを利用して、世界中のケアの格差を明らかにし、NMOおよび医療従事者(HCP)が使用可能なグラフ、チャート、インフォグラフィック、ツールを作成し、権利擁護支援メッセージを強化します。

インフォグラフィックは、最新の年次グローバル調査(AGS)および世界出血性疾患レジストリ(WBDR)のデータに基づいて作成されており、画像、PDFまたはスライドとしてダウンロードしたり、プレゼンテーションや権利擁護支援活動に利用したりすることができます。

WFHは、リアルタイムでカスタマイズ可能なクエリを含む、使いやすいデータ可視化システムを開発しました。このシステムによりユーザーは、報告、研究、権利擁護支援のあらゆるニーズに合わせて、最新のデータと過去のデータを検索・比較することができます。

 

WFHの新しいデータ収集システムを使用して作成されたAGSデータのグラフを閲覧・ダウンロードする。

WFH AGSミニレポートは、AGSデータのさらに詳細な展望や背景情報が得られる支援ツールです

血友病および他の出血性疾患に関連するグローバルデータ、および患者登録に関する査読付き論文も利用可能です。

遺伝子治療円卓会議シリーズ

WFH遺伝子治療円卓会議(Gene Therapy Round Table:GTRT)は、NMO、患者支援者、HCP、規制当局や業界代表者が一堂に会し、血友病の遺伝子治療に関連して現段階の世界的開発状況や予想される課題を共有するものです。

参加者

WFH遺伝子治療円卓会議(Gene Therapy Round Table:GTRT)は、招待制の会議です。主な科学専門家、規制当局、支払人、患者リーダーや患者支援者、HCP、科学者、業界代表者など、国際的な出血性疾患コミュニティから毎年80名ほどが招待されます。

目的

この円卓会議は、世界中の血友病患者(PWH)に対する遺伝子治療開発に関連する課題の理解を深めることを目的としています。主要な課題や議論は、世界的に見る遺伝子治療へのアクセス機会、規制や財政上の課題、遺伝子治療の不明な部分、安全性および有効性の長期追跡調査が中心となっています。また、複数の利害関係者およびグローバルな視点も考慮されています。WFH GTRTからの報告が公開されています。

遺伝子治療円卓会議プログラム委員会

共同議長

グレン・ピアス(Glenn Pierce)(米国)

デクラン・ヌーン(Declan Noone)(アイルランド)

 

メンバー

 

この委員会は、HCP、出血性疾患患者やその介護者8名で構成されています。

 

過去のプログラムはこちらでご覧いただけます。

WFH GTRTプログラム

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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.

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

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

South Africa - Johannesburg

Year of IHTC designation: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Physiotherapy

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

Japan - Nara

Year of IHTC designation: 1998

Nara Hemophilia Centre
Nara Medical University

Areas of Specialty

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

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
  • 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

Thailand - Bangkok

Year of IHTC designation: 1984

International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University

Areas of Specialty

  • Adult and pediatric hemostasis
  • Molecular genetics
  • Nursing
  • Dental care and surgery
  • Orthopedic care and surgery
  • Physiotherapy
  • Blood banking
  • Psychology and social services

France - Paris

Year of IHTC designation: 1972

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

Areas of Specialty

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

Belgium - Leuven

Year of IHTC designation: 1972

Hemofiliecentrum Leuven, University of Leuven

Areas of Specialty

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

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 hematology

Australia - Melbourne

Year of IHTC designation: 2005

Ronald Sawers Haemophilia 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

これまでの経緯

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。

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

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 - Manchester

Year of IHTC designation: 2008

Manchester Haemophilia Comprehensive Care Centre (Children’s and Adult’s)
Manchester Royal Infirmary and Manchester Children’s Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Molecular genetics
  • National Hemophilia database

United Kingdom - Oxford

Year of IHTC designation: 1972

Oxford Haemophilia Centre 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

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

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 Hemophilia Foundation

The National Hemophilia 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.

Light it Up Red landmarks

Argentina

Buenos Aires, Argentina Planetario
La Torre Monumental
Monumento Plaza Congreso
Palacio Lezama

If you’re aware of a landmark that is lighting up red for World Hemophilia Day 2022 that is not on this list, please forward the official confirmation from the landmark to [email protected] to have it added to the list. 

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

United States - Chapel Hill, North Carolina

Year of IHTC designation: 1972

University of North Carolina Hemophilia & Thrombosis Center

Areas of Specialty

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

United States - Columbus, Ohio

Year of IHTC designation: 2018

Nationwide Children’s Hospital

Areas of Specialty

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

Orthopaedic Hemophilia Treatment Center

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Physical therapy
  • 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
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Blood banking
  • Molecular genetics
  • 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

Twins of the Year Awards

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

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
2010

Antonia Luque de Garrido
Venezuela

2008

Jean Michel Bouchez
France

2006

Yuri Zhulyov
Russia

2004

Ashok Verma
India

Find a Treatment Centre

Find a WFH national member organization (NMO)

Quality of life scale

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].

Other available languages include

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.

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 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.

WFHのビジョンと使命

「Treatment for All(すべての患者に治療を)」というWFHのビジョンは、出血性疾患の種類、性別、居住地にかかわらず、すべての遺伝性出血性疾患患者が治療を受けられる世界を目指すことです。私たちの使命は、世界中の遺伝性出血性疾患患者に対する治療を維持向上させることです。