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Advocates in Action: The Forbes’ Family Meets President Obama

October 16, 2009

FOR IMMEDIATE RELEASE: October 16, 2009 Washington, DC:聽 聽Imagine having the opportunity to visit the Oval Office and meet the President of the United States.聽 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

October 12, 2009

聽 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

October 1, 2009

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

October 1, 2009

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

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

October 1, 2009

聽 Program Marks Continued Commitment to Education and Assistance to Hemophilia Community聽(Click Here for Announcement) 聽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

September 28, 2009

Cincinnati, Ohio (September 28, 2009) (Click Here for PDF)鈥 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. 聽Quest for Infusion: Nate Goes to Camp, written by Chris Perretti Barnes and illustrated by Michael Graham, is the story of […]

HFA Press Release: HFA MEETS GOAL OF 1,000 FANS ON OFFICIAL FACEBOOK PAGE!

September 28, 2009

FOR IMMEDIATE RELEASE: 聽 聽September 28, 2009 聽Washington, DC:聽 The Hemophilia Federation of America (HFA) launched its first online community social networking medium in July 2009.聽 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 […]

PPTA LAUNCHES NEW WEBSITE TOOL

September 28, 2009

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

HFA Press Release: HFA COLLABORATES WITH COTT OFFERING TRAVEL SCHOLARSHIPS TO SURVIVORS’ REUNION-CSL Behring offers $10,000 in support of the scholarships

September 23, 2009

FOR IMMEDIATE RELEASE: September 21, 2009 聽The Hemophilia Federation of America (HFA) will collaborate with the Committee of Ten Thousand (COTT) by offering a total of 33 travel scholarships for members of the Blood Brotherhood Program to attend COTT’s twentieth anniversary celebration and survivors’ reunion.聽 The celebration will be held at the Liaison Hotel in […]

HFA Press Release: HFA COLLABORATES WITH COTT OFFERING TRAVEL SCHOLARSHIPS TO SURVIVORS’ REUNION-Baxter offers $15,000 in support of scholarships

September 23, 2009

FOR IMMEDIATE RELEASE: September 21, 2009 聽The Hemophilia Federation of America (HFA) will collaborate with the Committee of Ten Thousand (COTT) by offering a total of 33 travel scholarships for members of the Blood Brotherhood Program to attend COTT’s twentieth anniversary celebration and survivors’ reunion.聽 The celebration will be held at the Liaison Hotel in […]

Community members take action to self-advocate and petition FDA for change!

September 9, 2009

Theresa Toigo, RPh, MBA Director Office of Special Health Issues Food and Drug Administration (FDA) 5600 Fishers Lane HF-12, Room 9-49 Rockville, MD 20857 Theresa.Toigo@fda.hhs.gov 聽 Dear Ms. Toigo, 聽 We are people with Hemophilia and their supporters. 聽 We recognize and appreciate the recent FDA publication of rules to clarify and expand the process […]

PRESS RELEASE: HFA WELCOMES NEW INTERN Amanda Winchester

September 8, 2009

FOR IMMEDIATE RELEASE: September 8, 2009 Washington, DC – Effective August 24, 2009 the Hemophilia Federation of America (HFA) is pleased to announce the addition of Amanda Winchester, Intern.聽聽 Ms. Winchester’s primary responsibility is Helping Hands Coordinator. Helping Hands is a program for individuals with hemophilia and von Willebrand disease that provides emergent financial relief […]

PRESS RELEASE: HFA AWARDED CDC COOPERATIVE AGREEMENT FOR FIT FACTOR PROGRAM

September 7, 2009

FOR IMMEDIATE RELEASE: September 1, 2009 The Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC, has been awarded a five-year cooperative agreement from the Centers for Disease Control and Prevention (CDC).聽 The award supports a program aimed at promoting physical activity and maintaining a healthy weight in individuals with hemophilia. 聽Proper […]

PRESS RELEASE: HFA AWARDED CDC COOPERATIVE AGREEMENT FOR BLOOD BROTHERHOOD PROGRAM

September 7, 2009

FOR IMMEDIATE RELEASE: September 1, 2009 The Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC has been awarded funding for a cooperative agreement from the Centers for Disease Control and Prevention (CDC).聽 The award, totaling $289,000 per year, supports a program aimed at providing social support, health information and skills to […]

Keeping Blood Transfusions Safe: FDA’s Multi-layered Protections for Donated Blood

September 3, 2009

Vaccines, Blood & Biologics Keeping the United States blood supply the world’s safest is the ultimate responsibility of the nation’s more than 3,000 blood establishments, which collect and process 14 million units of whole blood donated by volunteers each year. The Food and Drug Administration, however, has the vital role of ensuring that the 3.5 […]

Even with health insurance, Texans in high-risk pool struggle

August 27, 2009

Marshall News Messenger – Marshall,TX,USA Christian Rodriguez, a 22-year-old college student in Spring who has hemophilia, a blood–clotting disorder, expects to reach the $2 million lifetime maximum …

Announcing the formation of a Hemophilia HIV/AIDS National Memorial

August 26, 2009

Announcing the formation of a Hemophilia HIV/AIDS National Memorial Release date: 聽 Immediate聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 contact: 聽 聽聽聽聽聽聽聽聽聽聽聽 MARY LOU MURPHY 聽聽聽聽 781.444.8672 Terry MacNeil 聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 978.937.9857 聽 A national memorial fund has been established to honor those who have lost their lives to Hepatitis C and HIV/AIDS as a result of tainted blood products in the […]

September IS Pain Awareness Month

August 26, 2009

Greetings: September is Pain Awareness Month and the American Pain Foundation invites you to join us in sounding the alarm in communities across the country about the barriers to accessing appropriate and effective pain management and the desperate need for better pain care. This year’s campaign, Conquering Pain Together, includes a first National Day of […]

TAKE A WALK ON THE WILD SIDE WITH GREAT LAKES HEMOPHILIA FOUNDATION

August 25, 2009

TAKE A WALK ON THE WILD SIDE WITH GREAT LAKES HEMOPHILIA FOUNDATION PitchEngine – Riverton,WY,USA Hemophilia affects more than 500 individuals in Wisconsin, while von Willebrand disease affects 1-2% of the population, or roughly 110700 Wisconsin …

Ablynx Will Announce Half-Year Results For 2009 With Webcast

August 25, 2009

Ablynx Will Announce Half-Year Results For 2009 With Webcast PharmaLive.com (press release) – Newtown,PA,USA ALX-0681, a subcutaneous formulation of the novel anti-thrombotic Nanobodies® that also selectively targets von Willebrand factor (vWF) has concluded Phase …

Community Members Nathan & Sonji Wilkes, live on MSNBC

August 20, 2009

Check聽out the video of community members Nathan and Sonji Wilkes, interviewed聽by聽Dr. 聽Nancy on MSNBC today!

News Release

August 6, 2009

August 6, 2009 (Cincinnati, Ohio)聽聽 BioRx, a specialty pharmacy, and Hemophilia of North Carolina, a non-profit organization whose goal is to assist, involve and educate persons affected by bleeding disorders, announce the winners of the 2009 BioRx Educational Scholarships.聽 Each of the winners receives a $2,000 scholarship.聽 The scholarships are funded by BioRx through an […]

Von Willebrand Test

July 27, 2009

Google Web Alert for: von Willibrand Von Willebrand Test Tests may need to be done more than once because these levels may rise and fall over time in an individual The most common treatment for von Willebrand …

Plasma Protein Therapeutics Association Supports Patient-Centered …

July 20, 2009

Google News Alert for: von Willibrand Plasma Protein Therapeutics Association Supports Patient-Centered … SYS-CON Media – Montvale,NJ,USA … such as alpha-1 antitrypsin deficiency, bleeding disorders such as hemophilia and von Willebrand disease and primary immune deficiency diseases. …

They Need to Hear From Us: Destiny

June 23, 2009

I learned that legislators do want to hear from me.

BioRx Employees Climb Mt. Rainer to Raise Money

April 28, 2009

Cincinnati, Ohio (April 28, 2009) 鈥斅犅 On August 5, 2009, two BioRx employees, Jeff Salantai and Eric Hill, will climb Mt. Rainier as part of a national fundraiser called Summit For Someone.聽 The fundraiser benefits at-risk inner city youth who do not have the privilege of experiencing life outside the city.聽 Plus, all proceeds exceeding […]

Matrix Health Releases Activity Book for Kids

January 29, 2009

Ft. Lauderdale, Florida – January 2009 – Matrix Health Group is pleased to announce the release of a new children’s activity book entitled Time for Fun!. The book’s focus is to educate children up to the pre-teen years about the many facets of life with a bleeding disorder. Featuring numerous activities in a colorful and […]


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