交通と宿泊

スペイン、マドリード    2024年4月21日~24日

企画:

主催:

交通と宿泊

2024年WFH世界会議
[email protected]

企画:
世界血友病連盟

主催:
Federación Española de Hemofilia

世界血友病連盟(WFH)およびLa Federación Española de Hemofilia (Fedhemo)は、4月21日~24日にスペインのマドリードで開催される2024年WFH世界会議に世界の出血性疾患コミュニティを迎えることができ、嬉しく思います。

宿泊

We understand that finding suitable accommodation for the event is important for your comfort and convenience. While the official housing bureau is closed, we’re pleased to offer an alternative solution to assist you in securing accommodations for your stay in Madrid.

We’ve partnered with Stay22, a comprehensive reservation platform that collaborates with all major online travel booking agencies such as Booking.com, Trivago, Expedia, Hotels.com, VRBO, Kayak, and more. Stay22 is designed to help you find the best hotel deals tailored to your preferences.

Please note that transportation between the hotels on Stay22 and the IFEMA convention center is not provided. However, we encourage you to explore various transportation options available in Madrid, including public transit, taxis, rideshare services, or rental cars, to ensure seamless travel to and from the event venue.

For any inquiries or assistance regarding your booking, customer support will be provided by our booking partner, Stay22, and not the World Federation of Hemophilia.

Click here to view the accommodation options.

詐欺に関する警告です! 認可されていない宿泊会社にご注意

WFH世界会議事務局またはWFH宿泊案内サービス([email protected])以外で、2024年WFH世界会議の「公式の宿泊サービス提供者」であることをほのめかしたり断言したりする宿泊サービスが話を持ちかけてきた場合はお気をつけください。

WFH世界会議事務局およびWFH宿泊案内サービス以外の業者を通してのご予約について、当方は責任を負いません。WFHの代理だと断言する業者が話を持ちかけてきた場合は、[email protected]にご連絡ください。

2024年WFH世界会議の公式ホテル

ホテル 料金/1泊(米ドル*) 朝食 インターネット 世界会議用シャトルバス
Hotel H10 Tribeca – Sold out
スタンダードルーム - ベッド一台
$188*
シャトルバスで20分
Novotel Madrid Center – Sold out
スタンダードルーム - ベッド一台
$199*
シャトルバスで20分
RIU Plaza España – Sold out
スタンダードルーム - ベッド一台
$278*
シャトルバスで20分
Meliá Castilla – Sold out
スタンダードルーム - ベッド一台
$302*
シャトルバスで20分
Novotel Madrid Campo de las Naciones – Sold out
スタンダードルーム - ベッド一台
$337*
徒歩10分
Pullman Madrid Airport & Feria – Sold out
スタンダードルーム - ベッド一台
$350*
徒歩10分
出発地:
目的地:

ご予約

なぜ公式のWFH宿泊案内サービスで予約するのですか?

WFH宿泊案内サービスでの予約には、以下のように多くの利点があります。

  • 2024年WFH世界会議の一環として参加するホテルでの優待料金の保証
  • 宿泊料金にWi-Fiや税金すべてが含まれているため、予約手数料がかからず急な出費もない
  • 安全で間違いのない予約方法
  • 専用のメールアドレスと現地スタッフによるサポート
  • IFEMAコンベンションセンターへの無料シャトスバスでの送迎

WFH指定ホテル公式予約サイト

最も簡単で安全に予約する方法は、WFHのオンライン予約システムを使用する方法です。オンラインでのお支払いはクレジットカード(VisaまたはMasterCard)のみとなりますのでご注意ください。ホテルのご予約は2024322(またはホテルの部屋の割当て分が売り切れる)までです。2024年3月23日以降は、ホテルの空室状況によりますが、料金は保証できません。2024年3月23日以降の空室状況を確認するには、[email protected]宛てに電子メールをお送りください。

団体予約は10室以上の場合となります。団体責任者として連絡係を1名お決めいただき、その方がWFH宿泊案内サービスのマネージャーとの連絡をすべて担当してください。

10室以上の予約をご希望の場合は、ホテル一覧 からご希望のホテルをご確認いただき、団体用ホテル申込書 をダウンロードして、1日当たりの必要な部屋数をご記入の上、[email protected]宛てに電子メールでお送りください。ホテルには直接送付しないでください。

お申し込みから3営業日以内にWFH宿泊案内サービスより返信いたします。ホテルの部屋の割当ては先着順となりますのでご了承ください。

ご入金はクレジットカード(VisaまたはMastercard)もしくは電信送金でご対応いただけます。2024年3月2日以降はクレジットカードのみでのお支払いとなります。宿泊予約についてその他の情報、変更、取り消しなどに関するお問い合わせやご要望は、WFH宿泊案内サービスに書面でご連絡ください。ホテルには直接連絡しないでください。

    1. クレジットカードでのお支払い:WFH宿泊案内サービスから、全体の宿泊料金のうち1泊分に相当する保証金をあなたのクレジットカードに請求します。この保証金は返金できません。イベント50日前(2024年3月1日)に宿泊料金の残額を請求いたします。WFH宿泊案内サービスが有効なクレジットカード番号とともに記入済みの予約申込書を受領した時点で予約確定となります。
    2. 電信送金:クレジットカード(VisaまたはMastercard)による予約保証ができない場合は、 オンライン予約ツールを使用して予約を完了し、支払い方法として電信送金を選択してください。全体の宿泊料金の100%に相当する保証金(米ドル)が請求されます。請求書受領後7営業日以内に全額をお支払いいただけない場合、ホテルの予約は確定されません。請求書をお受け取りになるまでは、電子送金の手続きをしないでください。WFHの米ドルの口座情報はこちらをご覧ください。

予約のお申込みをいただいてから48時間以内に、ホテルの確認メールが送信されます。確認メールにはホテル名と所在地、1泊当たりの料金が記載されています。予約手続きはすべてWFH宿泊案内サービスが行いますので、ホテルには直接連絡しないでください。

登録内容のご変更または取り消しについては[email protected]宛てに書面でご連絡ください。予約の変更または取り消しの確認書をお送りします。ご要望にはすべて以下の条件が適用されます。

  • お名前の変更はできません。
  • ご予約が全額前払いの場合は、取り消しのご希望を2024年3月1日中までにお送りいただく必要があります。
  • 返金は、管理手数料として1泊分の宿泊料金に相当する金額を差し引いた分とさせていただきます。
  • 2024年3月2日以降のお取り消しについては返金いたしません。
  • 1泊分の保証金のみをお支払いただいている場合、保証金の返金はできません。
  • 予定より早くチェックアウトする必要が出てきた場合、返金はいたしません。
  • 返金(該当する場合)はすべて、世界会議終了後30日以内に処理させていただきます。

参加者の皆さまには、こちらのオンライン登録リンクから、会議への登録とホテルの予約を同時に行っていただくようお願いいたします。これにより、イベント登録とホテル予約が確実にリンクされます。また、宿泊料金も最もお値打ちな価格となります。現時点で会議に登録することができないが、ホテルの宿泊予約はしておきたいという方は[email protected]へご連絡ください。

宿泊に関するご質問は、すべて以下に直接お知らせください。

WFH宿泊案内サービス
1425, boul. René-Lévesque Ouest, Bureau 1200
Montréal, Québec H3G 1T7 Canada
電話:+1 (514) 394-2834
ファックス:+1 (514) 875-8916
電子メール:[email protected]

TREATMENT ROOM

A treatment room will be available for all participants at the WFH 2024 World Congress. For details on the medical treatment in Spain, bringing your own factor, the Congress treatment room, and more, see below.

When planning your trip to Spain for the WFH 2024 World Congress, we encourage you to take the following into account.

  • Free medical treatment is generally not available to foreign visitors to Spain
  • It is recommended that you purchase personal travel insurance for your visit to Spain to cover emergency medical treatment and health care in the case of any other illness or accident that might occur, even if you cannot be insured for your pre-existing medical condition(s)
  • In general, you should bring enough clotting treatment for hemophilia with you for your entire stay
  • If you are travelling to different parts of Spain before or after the WFH 2024 World Congress, note that clotting factor product for an emergency may be limited to larger hospitals. The host NMO, The Federación Española de Hemofilia (Fedhemo) website provides a list of hemophilia treatment centres in Spain (click here to find out more).
  • A treatment room, stocked with donated clotting treatment, will be available during Congress

You may bring a supply of prescribed medications into Spain for your personal use without a permit, provided they are commercially prepared and manufactured. This includes your regular prescribed medicines and clotting factor products.

Helpful hints for all medicines and clotting factor products

  • Keep the medicine in its original packaging with the product labelling visible
  • Make sure you bring a letter written in English, from your doctor explaining that you require these medicines and/or clotting factor concentrates for your medical condition and that you have been prescribed a less than three-month supply to bring to Spain with you. Your doctor’s letter should indicate if you need to carry needles or syringes in addition to administration devices supplied by the manufacturer. For a letter template, click here.
  • Declare your medicines to Spanish customs and provide the letter from your doctor
  • It is advised that you carry your medicines in your carry-on baggage, not in checked baggage
  • It is your responsibility to store your medicines and clotting factor in packaging that meets manufacturers’ advice for temperature control, and to check with your airline that your cold store packaging meets all security requirements

A bleeding disorders treatment room will be set up for the duration of Congress in the North Convention Centre (NCC), on Level 2, in the Colón meeting room, close to the plenary room and all session rooms. Specialized physicians and nurses will be available to assess emergency and semi-urgent situations related to your bleeding disorder and to assist with infusions. Physiotherapists will be available in the same location at designated times, from April 20 to 25, to support patients who are having an acute or sub-acute bleeding episode. Volunteers will assist delegates to get to the treatment room from a treatment room desk in the foyer outside the exhibition hall. A limited number of scooters, wheelchairs, crutches, and walkers are available upon request.

Hours of operation

Congress and AMGA service
IFEMA Madrid: Colón meeting room, 2nd Floor, North Convention Center
Saturday, April 20 Nursing 14:00 to 18:00
Sunday, April 21 Nursing and physiotherapy 8:00 to 18:00
Monday, April 22 Nursing and physiotherapy 8:00 to 18:00
Tuesday, April 23 Nursing and physiotherapy 8:00 to 18:00
Wednesday, April 24 Nursing and physiotherapy 8:00 to 18:00
Thursday, April 25 Nursing 8:00 to 14:00

Emergency services for both bleeding and non-bleeding-related incidents outside of Treatment Room regular hours

For serious issues, please contact the Hospital Universitario La Paz.

Hospital Universitario La Paz
P.º de la Castellana, 261, Madrid
Emergency services offered 24 hours.
Tel.: 91 727 7339

Note: If the emergency involves a bleeding disorder, please make sure to mention this when calling or arriving at the hospital.

Haematology and hemotherapy department
8:00 am to 14:30 pm
Tel.: 91 727 7225


Other medical problems that are not related to a bleeding disorder

If your medical problem is not related to your bleeding disorder, it is suggested that you contact a doctor through your hotel/accommodation.


Medical care and emergencies at IFEMA Madrid

IFEMA MADRID provides a dedicated area on the first floor, situated between Halls 7 and 9, for medical assistance and emergencies. For any inquiries or assistance, you can reach them at the contact phone number: 91 722 5400. This hotline is operational 24/7, serving as the centralized point for all relevant actions and inquiries.


Hemophilia treatment centres in Spain

For a full listing of hemophilia treatment centers in Spain visit the Federación Española de Hemofilia (Fedhemo) website here.

Did you know?

The WFH 2024 World Congress is making sure that all service provider personnel at the event have received hemophilia awareness training. This is part of our effort to ensure that every attendee has an enjoyable and safe experience at Congress.

ACCOMMODATIONS FAQ

Q
Why book through the official WFH Housing Bureau?
A

Booking through the WFH Housing Bureau offers you many benefits, including the following:

  • Guaranteed preferential rates at participating hotels listed as part of the WFH 2024 World Congress
  • No booking fees or surprise costs since all rates are inclusive of Wi-Fi and all taxes
  • Secure and safe booking transactions
  • Dedicated email address and on-site staff for assistance
  • Complimentary shuttle transportation to/from the IFEMA convention center
Q
How do I book and pay for my hotel room?
A

Registration and housing must be done simultaneously by using the online registration link. A one-night deposit will be charged to confirm the hotel reservation. This deposit can be made by credit card (Visa or Mastercard) or bank transfer. Should you need to cancel, there is a 1-night penalty if cancelled. Please send an email to [email protected] for hotel bookings of 10 rooms or more.

Q
Do we contact the hotel directly for new reservations or changes to existing reservations?
A

The WFH Housing Bureau is the only official WFH 2024 hotel agency, so hotel rooms must be booked directly through the bureau. Please do not contact the hotel directly for reservations or for changes to your reservation. For requests or changes, please send an email to [email protected].

Q
I have a specific question about the hotel, can I contact the hotel directly, or should I contact the WFH Housing Secretariat?
A

For any questions about the hotel in general, or your hotel reservation, please contact the WFH Housing Bureau at [email protected].

Q
I called the hotel, and they have no record of my reservation. What should I do?
A

Reservations are held with the WFH until April 1, 2024. After that date, the list of names is sent to the hotels.

Q
Do any of the WFH hotels offer smoking rooms?
A

All WFH selected hotels are fully non-smoking properties.

Q
Are any of the WFH hotels accessibility friendly?
A

All WFH selected hotels are fully accessible.

Q
Can I reserve early check in or late checkout?
A

You can submit early check in and/or late checkouts requests and the hotels will do their best to accommodate your request. For guaranteed early check ins and late checkouts, one additional room night will be charged.

Q
What happens if the WFH 2024 Congress is cancelled?
A

Your room reservation is 100% refundable in case the Congress is cancelled due to COVID-19 or another unavoidable circumstance. This is only applicable for room reservations directly made via the WFH Housing Bureau. If you have booked your room via another agent or platform, this cancellation policy will not apply.

シャトルバスサービス

世界会議の期間中(4月21日~24日)、WFH公式ホテルとIFEMAコンベンションセンターを結ぶシャトルバスサービスをご用意します。シャトルバスはMeliá Castilla、Hotel H10、RIU Plaza Españaを経由します。朝から夕方頃までおよそ30分間隔で循環運行する予定です。WFHのシャトルバスの乗降場所がわかるよう、すべての乗車場所に2024年WFH世界会議の案内を掲示します。

障害のあるアメリカ人法(ADA)に準拠するシャトルバスが必要な場合は、[email protected]宛てに電子メールを送信してください。

交通

代表者の皆さまには、最も持続可能な方法で会議にお越しいただくことをお勧めいたします。以下をご検討ください。

Interested in learning more about the environmental impact of your trip to Congress? Try out our carbon emissions calculator now!

マドリードの主要空港は、アドルフォ・スアレス・マドリード・バラハス空港という空港です。詳細については空港のウェブサイト(こちら)をご参照ください。

The official congress carrier is IBERIA

We are happy to offer you the following discount:
Voucher code: WFHMAD2024

The voucher code is entered on the final page of the booking process.

See above an example of the voucher window

Discount
10% off final price (taxes included)
Validity
Purchases on www.iberia.com, on any Iberia / Iberia Express or Iberia Regional AirNostrum operated flight.
Purchase date
Until April 24, 2024
Inbound flight dates
From April 16, 2024 to April 24, 2024
Outbound flight dates
From April 21, 2024 to April 30, 2024

Attractive discounts, up to -15%, on a wide range of public fares on all AIR FRANCE, KLM and their code-shared flights worldwide.

Event
WFH 2024 World Congress
ID Code
41061AF
Travel valid period
April 14, 2024 to May 1, 2024
Event location
Madrid, Spain

To book, please visit:
https://globalmeetings.airfranceklm.com/Search/promoDefault.aspx?vendor=AFR&promocode=41061AF


地下鉄

4つのエアターミナルから市街(Nuevos Ministerios[ヌエボスミニステリオス]駅)へは地下鉄8号線(ピンク)で30分弱です。


バス

Avenida América(アベニーダ・アメリカ)駅まで、200番(運行時間:午前6:00~午後11:30、全ターミナルを経由)のバスで30分、1.50ユーロです。この駅は別の地下鉄線に接続しています。


鉄道

アドルフォ・スアレス・マドリード・バラハス空港から市街まで最速で行くには鉄道(C1線)を利用します。運賃は2.60ユーロで、それとは別にトラベルカード代0.5ユーロがかかります。

高速鉄道(AVE)は、スペインのほか欧州の多くの都市から、マドリードのAtocha(アトーチャ)駅とChamartín(チャマルティン)駅を結びます。詳細については以下をご参照ください。

国際鉄道:

国有鉄道:

マドリード市内の公共交通機関には、地下鉄(Metro[メトロ])と路面電車(Metro Ligero[メトロリヘロ])、バス、郊外鉄道があります。マドリードの公共交通機関に関するページを見るにはこちらをクリックしてください。

マドリードでは、Uber(ウーバー)、Cabify(キャビファイ)、一般タクシーのご利用が可能です。

現時点で、スペイン内またはスペインへの移動についてCOVID-19関連の制限はありません。ただし、疫学的状況の変化に関わる問題を避けるため、COVID-19による制限に関するスペイン政府公式ウェブページ(こちら)をご確認ください。

マドリードのご紹介

上記のリンクに問題がある場合:PDFファイル(英語のみ)こちらをクリック。交通情報の詳細については www.esmadrid.com/をご覧ください。

ビザの要件

マドリードへの訪問を計画する前に、しかるべき渡航書類をすべて揃える必要があります。マドリード訪問にビザが必要かどうかはお持ちのパスポートによって決まりますのでご注意ください。

スペインはシェンゲン協定に加盟しているため、シェンゲン協定加盟国からの来訪者は自由に移動でき国境での入国審査も行われません。非加盟国から訪問する場合は、すぐに居住国のスペイン大使館で観光ビザを申請してください。詳細についてはマドリードビザ情報のサイトをご覧ください。

ビザの招へい理由書

ビザの招へい理由書が必要な場合は、[email protected]へご連絡ください。

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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.

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

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

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)

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

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

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

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

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

Twins of the Year Awards

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

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

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 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 - 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

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。

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