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FOR IMMEDIATE RELEASE:    December 10, 2009

Washington, DC:  The National Organization for Rare Disorders (NORD) recently approved the Hemophilia Federation of America (HFA)for membership.  One of 150 member organizations, the HFA is excited about the opportunity to participate with NORD on important public policy, advocacy, awareness and educational issues.  Certain standards and requirements must be met and approved by the NORD Board of Directors for national membership. 

Kisa Carter, HFA Public Policy Director, is excited about the opportunity to join NORD’s network of rare disease organizations. “This will give HFA an opportunity to collaborate with rare disease organizations across the country to represent 30 million Americans with rare diseases.”  

NORD is a national organization dedicated to helping people with rare “orphan” diseases and assisting organizations that serve them.   NORD is also named as the United States sponsor of World Rare Disease Day set to take place annually on February 28.  HFA will join NORD as a Rare Disease Day Partner in 2010 to recognize and promote awareness of this day.   To learn more about NORD, please visit its website at http://rarediseases.org/info/about.html.

 

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The Hemophilia Federation of America is a national 501(c)(3) organization consisting of 30 member organizations and numerous individual members who offer assistance and grassroots advocacy on behalf of the bleeding disorders community.   Incorporated in 1994, the HFA provides programs and services to improve the quality of life for persons with hemophilia and von Willebrand disease (VWD).

For more information, visit our website at www.hemophiliafed.org or call 1-800-230-9797.  

 

HFA CONTACT:  Susan Swindle, Development Director| 713.203.8548 | s.swindle@hemophiliafed.org

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