WFH News

WFH appoints John Bournas as new CEO/Executive Director

The World Federation of Hemophilia is pleased to announce the appointment of John Bournas as CEO/Executive Director. Mr Bournas brings over fifteen years of senior managerial experience in the healthcare and not-for-profit sectors and international experience as a diplomat. Read more here.

December 2011

Gene therapy trial for hemophilia B shows promising results

The first unequivocal evidence of success in gene therapy for hemophilia B was published online Saturday in the New England Journal of Medicine. Six patients with severe hemophilia B responded to injections of a normal factor IX gene. Read more here.

Advocacy in Action workshop provides new tools and tactics

The third Advocacy in Action workshop took place in Mexico City November
4-6, 2011. Sixteen participants from eight Latin American national member organizations (NMOs) gathered for a two-and-a-half day workshop on “Strategies for better advocacy.”

Congratulations to the 2011 recipient of the
Susan Skinner Memorial Fund

Congratulations to Alexandra L. Johnson on becoming the most recent recipient of a Susan Skinner Memorial Fund Scholarship. A dedicated volunteer leader, Alexandra was selected by the WFH USA Board from a group of six eligible applicants. To read more information on Alexandra, click here.

WFH CEO Claudia Black steps down

After 15 years of dedicated service, Claudia Black, WFH CEO/Executive Director since 2007, has decided to step down and explore new opportunities. Read her personal message here.

Twins of the Year Announcement

Meet the 2010 Twins of the Year who share this year’s honour across four continents. Their dedication and enthusiasm are shining examples of what can be achieved when members of the global bleeding disorders community work together to improve treatment and care for all. More

Defining the WFH role in research

In March 2011, the WFH organized its first Global Research Forum to define and debate the most pressing research questions that affect the bleeding disorders community, with the ultimate goal of identifying how the WFH can help foster research in these areas to improve treatment and care. More

Annual Report

A summary of WFH activities and accomplishments in 2010 may be found in this year’s Annual Report, now available online. PDF

Dublin Consensus Statement 2011

The WFH has joined with 22 patient groups in endorsing the Dublin Consensus Statement 2011 on vital issues relating to the collection and provision of blood components and plasma-derived medicinal products. The statement has also been endorsed, with qualifications, by several other key stakeholders. Read about it here.

WFH and ISTH formalize collaboration with memorandum of understanding

Kyoto, July 27, 2011 ‒ The WFH and the International Society on Thrombosis and Haemostasis (ISTH) have signed a memorandum of understanding at the XXIII Congress of the ISTH in Kyoto, Japan, to formalize collaboration and coordination of activities between the two organizations. PDF

WFH welcomes new Executive Committee member

The WFH is pleased to announce the addition of David Silva to the WFH Executive Committee. Silva was co-opted to the Executive Committee in April. Silva is also the CEO of the Galician Society for People with Disabilities (COGAMI) and a member of the Steering Committee of the Galician Hemophilia Society.

World Hemophilia Day prize draw winner announced!

Congratulations to Matthew Perkins who won a digital camera in our prize draw. The WFH would like to thank everyone who participated in the ‘Share Your Story’ forum. Over 150 original postings expressed the challenges, emotions, and determination that are part of living with or supporting a person with a bleeding disorder. More

Bad Blood documentary to air in U.S. and Canada
on PBS

May 2011
Click here for the broadcast schedule. The film Bad Blood: A Cautionary Tale documents a tragic time for the hemophilia community. It examines the crisis in decision making within the very system intended to protect them from infections such as HIV and hepatitis C. Although the film is told from a U.S. perspective, the reach and implications for the global community were significant.

Bayer Healthcare to Sponsor World Federation of Hemophilia Global Training Program

Montville, NJ, and Montréal, Quebec — April 28, 2011
Bayer HealthCare Pharmaceuticals and the WFH are announcing a three-year extension of Bayer’s sponsorship agreement with WFH. The agreement calls for Bayer to serve as sole sponsor of WFH’s International Hemophilia Training Centre (IHTC) program, in addition to providing support for other WFH activities, such as its Web site and Congress. PDF

Majority of people with bleeding disorders globally
do not have access to adequate treatment

Montreal, April 13, 2011 ‒ The World Federation of Hemophilia is organizing a global campaign to raise awareness of bleeding disorders and the struggle for adequate care on April 17, World Hemophilia Day. PDF

Enhancing Affordability and Global Supply —
Are Biosimilars a Solution?

April 2011
Biosimilars, also known as follow-on biologics, are widely touted as a key ingredient to improving affordable access to biologic products, such as clotting factor concentrates. More

CSL Behring Marks World Hemophilia Day with Coagulation Factor Donation to WFH

King of Prussia, PA & Montreal, CAN — 16 February, 2011
Donation will aid WFH’s Global Alliance for Progress program to improve healthcare in the developing world. PDF

Last updated January 2012