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The Long Mile by Barry Haarde Download Barry’s Story There was only one more hill to climb as I rounded the corner that brought the finish line into view. I had ridden my bicycle 175 miles since lining up at the starting point back in Houston the day before. After more than 10 hours on […]


Download Rick’s Story By Rick, Jessie’s Dad My son Jesse was born on Valentine’s Day in 2001. He is now 4 years old and has severe hemophilia. It is hard to believe the amount of emotions that have transpired in the short period since his birth. Life leads us down many paths. The path of […]

Advocates in Action: The Forbes’ Family Meets President Obama

FOR IMMEDIATE RELEASE: October 16, 2009 Washington, DC:   Imagine having the opportunity to visit the Oval Office and meet the President of the United States.  This opportunity became a reality for 12-year old Emmanuel Forbes with severe hemophilia complicated by an inhibitor, his five siblings and parents, Michael and Jane Forbes. Emmanuel was granted his […]

Baxter Recognizes Outstanding Hemophilia Advocacy Initiatives

  It is with great pleasure that Baxter applauds the Partnership for Advocacy and Communications Training (PACT) Grant winners. Run by the Hemophilia Association of New Jersey (HANJ) and supported through a grant from Baxter, the PACT Grant Program provides financial assistance to support a wide range of advocacy programs from the bleeding disorders community. […]

Heparin: Change in Reference Standard

FDA MedWatch Heparin: Change in Reference Standard – The change will result in 10% reduction in the potency of the heparin marketed in the U.S. Audience: Pharmacists, physicians, hospital risk managers and consumers FDA notified healthcare professionals and patients of a change to heparin, effective October 1, 2009, which will include a new reference standard […]

NORD Press Release

 Danbury, CT. —– The leading advocacy groups for Americans and Europeans with rare diseases—the National Organization for Rare Disorders (NORD) and the European Organization for Rare Diseases (EURORDIS)—have signed a Memorandum of Understanding to join forces on several key strategic initiatives on behalf of rare disease patients and their families.  The intent is to increase […]

Wyeth Announces Recipients of the Soozie Courter "Sharing a Brighter Tomorrow" Hemophilia Scholarship Program

  Program Marks Continued Commitment to Education and Assistance to Hemophilia Community (Click Here for Announcement)  Collegeville, Pa., September 29, 2009 division of Wyeth (NYSE:WYE), today announced the recipients of the Soozie Courter “Sharing a Brighter Tomorrow” Hemophilia Scholarship Program for the 2009 assistance for higher education to individuals with hemophilia. Since 2002, Wyeth has donated […]

BioRx and Bayer Healthcare Offer Free

Cincinnati, Ohio (September 28, 2009) (Click Here for PDF)— Bayer HealthCare and BioRx, a specialty pharmaceutical company, announce the availability of Quest for Infusion: Nate Goes to Camp, a new children’s book about hemophilia.  Quest for Infusion: Nate Goes to Camp, written by Chris Perretti Barnes and illustrated by Michael Graham, is the story of […]


FOR IMMEDIATE RELEASE:    September 28, 2009  Washington, DC:  The Hemophilia Federation of America (HFA) launched its first online community social networking medium in July 2009.  HFA’s official Facebook site is designed to make connections and build relationships with community members across the country. On September 19, 2009, just two months after the page was […]


FOR IMMEDIATE RELEASE  September 23, 2009  Contact: Kara Flynn                                                 Kym H. Kilbourne (443) 458-4669                                                           (443) 458-4682 (443) 370-1177 (cellular)                                           (443) 995-2102 (cellular)                                   PPTA LAUNCHES NEW WEBSITE TOOL (Click Here for PDF) Enhancement to help potential plasma donors find plasma centers  ANNAPOLIS, MD (September 23, 2009) – Visitors to can more […]

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Assisting and Advocating for the Bleeding Disorders Community