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News & Perspectives

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 […]

President Obama to address Congress September 9

September 4, 2009

On September 2, Speaker of the House Nancy Pelosi and Senate Majority Leader Harry Reid sent a letter to President Obama asking him to address a Joint Session of Congress.聽 On September 9, President Obama has a speech planned to lay out a more detailed health care reform plan before a joint session of Congress.聽 […]

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 […]

Farewell to Harvey as he heads to Hampton University

September 3, 2009

Harvey Gates, Jr. will be missed by the HFA Team.聽 Harvey spent the entire summer as an intern with HFA.聽 As a community member with hemophilia, Harvey realizes the importance of supporting community organizations.聽 Harvey completed multiple projects聽 and expressed enthusiasm while working for HFA this summer.聽 We wish him well as he heads back […]

Ablynx Initiates Phase II Clinical Trial for Alx-0081

September 3, 2009

聽 01 Sep 2009 Ablynx announced the initiation of a Phase II study for its anti-thrombotic Nanobody ALX-0081, a first-in-class Nanobody targeting von Willebrand Factor (vWF)GHENT, BELGIUM | September 1, 2009 | Ablynx [Euronext Brussels: ABLX] today announced the initiation of a Phase II study for its anti-thrombotic Nanobody ALX-0081, a first-in-class Nanobody targeting von […]

What’s gonna happen next?

September 2, 2009

September is here and Congress is back in session next week.聽 There are still many unanswered health reform questions.聽 Last week, the Kaiser Health Network reported on Senator Chuck Grassley’s view of next steps; “If town meetings are going to mean anything, if democracy is going to mean anything, then you listen to your people […]

HFA Launches Students for the Awareness of Bleeding Disorders (SABD) web pages

September 1, 2009

Young leaders are instrumental to the future of the bleeding disorders community.聽 Students and young adults have a VOICE and an important story to tell.聽 Furthermore, they want to be involved and advocate for the bleeding disorders community.聽 In response to those needs, the HFA Team has launched web space on the HFA website to […]

MASS INACTION: Placing the Massachusetts Model and Healthcare debate in a National context

August 31, 2009

In 2004, local community groups placed a constitutional amendment on the ballot creating a right to “healthcare for all.” Massachusetts election law requires constitutional amendments be approved by the voters and the legislature twice in two successive elections. Both the legislature and voters approved the measure in ’04. But in 2006, Governor Romney, at the […]

“Lies, Damned Lies and Statistics”

August 28, 2009

Coal miners use to rely on canaries to let them know when an unhealthy level of gases had built up. The canary would end up meeting an untimely demise, but more often than not, the accompanying miner would end up getting out safely. Over time the idea of the coal miner has become romanticized, complete […]

Remembering Senator Kennedy

August 27, 2009

Senator Edward “Ted” Kennedy, spent 9-terms (40-plus years) in the Senate.聽 He will be laid to rest on Saturday, August 29, 2009 at Arlington National Cemetery.聽 He was one of the most outspoken and effective members of the Senate.聽 He has been a long term proponent of health care reform and has a lengthy record […]

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 …

Focus on Data Mining

August 21, 2009

When a patient fills a prescription at a major pharmacy, a record of that prescription (minus the patient name) is sold to companies – so-called health information organizations – that pool information from multiple pharmacies. The bundled information is combined with individual physician identities purchased from the American Medical Association to create prescriber profiles (name, […]

Chutes and Ladders

August 20, 2009

I have an admission. I am not particularly proud of myself, but I got a D- in High School Biology. Normally, I wouldn’t share something this personal in this space, but I do so to illustrate a point. In High School, I couldn’t look at the model of the double helix in class without thinking […]

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!

Ablynx Announces Positive Phase I Results for Subcutaneous Administration of it’s Ant-thrombotic NanobodyR (ALX-0681)

August 19, 2009

GHENT, Belgium, 18 August 2009 – Ablynx [Euronext Brussels: ABLX] today announced the positive results from its double-blind, randomized, placebo-controlled, single and multiple dose Phase I study with ALX-0681, a subcutaneous formulation of its novel anti-thrombotic Nanobody® that selectively targets von Willebrand factor (vWF). The positive Phase I data support the progression of ALX-0681 towards […]

Francis S. Collins sworn in as NIH Director

August 18, 2009

Francis S. Collins, M.D., Ph.D., NIH Director Francis S. Collins, M.D., Ph.D., was officially sworn in on Monday, August 17, 2009 as the 16th director of the National Institutes of Health (NIH). Dr. Collins was nominated by President Barack Obama on July 8, and was unanimously confirmed by the U.S. Senate on August 7. Dr. […]

Why Palliative Care matters…

August 18, 2009

In 2008, New York took an active approach to increasing the use of palliative care by educating health care professionals about this form of care and its potential benefits passing Senate Bill 2108. SB 2108 provided $4.5 million in grants from the state’s public health budget to recruit faculty for and develop programs in health […]

2009 Meeting Materials of the Blood Products Advisory Committee

August 18, 2009

2009 Meeting Materials of the Blood Products Advisory Committee聽 Transcripts of the 7/20-21/2009 Meeting, Posted: 8/18/2009

Read Nathan Wilkes’ remarks from Grand Junction, CO town hall meeting

August 17, 2009

Nathan Wilkes and his family have truly inspired聽the community to share their stories and let their VOICES be heard.聽 To read聽Nathan’s entire introduction on August 15, 2009聽CLICK HERE.

Nathan Wilkes introduces President OBAMA at town hall meeting

August 15, 2009

Nathan Wilkes, a bleeding disorders community member, 聽had the opportunity to introduce President OBAMA today at a townhall meeting in Grand Junction, CO.聽 Before the introduction, he聽highlighted how his 6-year old son with hemophilia nearly reached the lifetime insurance cap.聽 He聽emphasized his family’s concerns with聽health insurance coverage.聽聽HFA is excited Nathan had the opportunity to聽represent the […]

HFA applauds Paterson, NY legislature effort to address the coverage needs of dependent children

August 12, 2009

Last week, New York Gov. David A. Paterson has signed into law a series of health reform efforts, including: extending coverage to those who are uninsured and 29 or younger and increasing the age of a dependent to 29. In signing the bills, Paterson said “the reforms will make health insurance more affordable for New […]

Town hall meeting frenzy

August 7, 2009

Town hall meetings across the United States have gotten out of control.聽 Fights, yelling, tombstones with names of Congress members, and vulgar posters are the norm.聽 Members of Congress are in fear of their lives.聽 Some have opted for “tele-town hall meetings” instead. What happened to civil meetings with dialogue between Congress members and their […]

The Health and Human Services Secretary discusses health insurance reform on 8-7-09

August 6, 2009

HHS Secretary Kathleen Sebelius and top HHS officials plan to discuss reform of the health insurance system Friday at 1pm.聽 To watch the webcast, click here.

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 […]


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