News & Perspectives


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 (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 […]

For Immediate Release: July 29, 2009

August 6, 2009

Contact: CDC Division of Media Relations (404) 639-3286 CDC Advisors Make Recommendations for Use of Vaccine Against Novel H1N1 The Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices (ACIP) met today to make recommendations for use of vaccine against novel influenza A (H1N1).聽 The committee met to develop recommendations on who should […]

Why is Health Information Technology emerging as a state issue?

August 6, 2009

Much of the action on health care continues to occur at state and local levels, with support from the federal government and national and local philanthropies. Many states begin by forming a commission to develop an action plan for HIT and, most significantly, bring together the various interested parties. Since 2005, almost one-third (17) of […]

Plasma Users Coalition (PUC) Develops Health Care Reform Principles

August 6, 2009

Several national patient organizations representing the Alpha-1 antitipsin, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Guillain-Barre, hemophilia, platelet disorders, primary immunodeficiency diseases and other rare disease communities have formed a group to address the unique needs of users of “plasma protein therapies” (plasma derived and recombinant therapies). To address the uniqueness of PUC’s membership, the group developed […]

Congratulations to the Pennsylvania Bleeding Disorders Community

August 5, 2009

This afternoon, the Hemophilia Standards of Care Act passed in the Pennsylvania House of Representatives by a vote of 197-0.The bipartisan nature of this vote underlies the import of this legislation. In winning on the floor, the community withstood enormous pressure from Pennsylvania Insurance lobby and the business community. The legislation now moves on to […]

It’s all about the kids…

August 3, 2009

If you have found your way to this blog, you might consider yourself web savvy. Phrases like digital divide聽and things like tweeting may even be second nature to you. But if you have teenagers in your home, you are always playing catch up. Cyberspace is their playground. You and I know that. Your kids know […]

About Advisory Committees…

August 1, 2009

Last week, Ohio Governor Ted Strickland vetoed the formation of a new Hemophilia Advisory Committee saying that one existed as a matter of Ohio law and had been dormant for years, and as such the new measure was redundant. In聽Georgia, Governor Roy Barnes delivered a veto this month to a measure that would have created […]

Have you called your member of Congress? Call during the August recess!

July 30, 2009

There is an urgent need for consumers to reach out to their member of Congress! Healthcare reform is happening now.聽 It is more important than ever that you reach out to your members of Congress now.聽 The National Health Council and Families USA have provided consumers with toll-free numbers to reach their member of Congress.聽 […]

Have you actually read H.R. 3200?

July 29, 2009

Yesterday I received an email from a member of the bleeding disorders community.聽 The email began with “this is NOT a health care plan but a system to further invade your life/privacy, take your money, ration health care, control salaries of medical professionals聽and prescribe your death plan”. 聽The email highlighted sections of America’s Affordable Health […]

Notes from Philadelphia…

July 29, 2009

I had the distinct honor of representing HFA at the National Conference of State Legislators 2009 Summit in Philadelphia last week.聽The National Conference of State Legislatures is a bipartisan organization that serves the legislators and staffs of the nation’s 50 states, its commonwealths and territories.聽For five days, 5,000 state legislators and another 5,000 staff people […]

Healthcare Federalism

July 29, 2009

Watching the goings on in Congress around the various healthcare proposals, one might think that the day after Congress passes a reform package we all will immediately have insurance coverage. A quick primer in legislative process might come in handy here. Congress is charged with creating the rules. This is going on now. The various […]

Bayer HealthCare Launches Hemophilia Self-Infusion Training Program

July 28, 2009

News Release聽聽 Innovative BayCuff鈩 Program Empowers Young Members of Hemophilia A Community to Take Control of Their Treatment WAYNE, NJ, July 9, 2009 – Today, Bayer HealthCare Pharmaceuticals launched the BayCuff鈩 self-infusion training program, an educational initiative designed to make infusion of recombinant factor VIII easier for both patients with hemophilia A and for their […]

FDA Update: U.S. Department of Health and Human Services

July 28, 2009

Guidance for Industry: Nucleic Acid Testing (NAT) to Reduce the Possible Risk of Parvovirus B19 Transmission by Plasma-Derived Products:

Kimberly’s “wild” town-hall meeting with Rep. Sensenbrenner

July 27, 2009

“Obama’s health plan will make the current situation worse”.聽 Rep. Sensenbrenner’s declaration set the tone for a “very charged up” crowd at recent town-hall meeting attended by HFA’s very own Executive Director, Kimberly Haugstad.聽 Many attendees in the standing room only meeting expressed significant frustration with the member who represents Wisconsin’s 5th-district.聽 Obama supporters expressed […]

Check to see how the House Tri-Committee health reform bill will impact where you live

July 27, 2009

The House Energy and Commerce Committee analyzed the impact that America’s Affordable Health Choices Act of 2009 (H.R. 3200) would have on each member’s district.聽 To learn more about the impact of the legislation on small businesses, seniors in Medicare, health care providers, and the uninsured, please click DISTRICT-BY-DISTRICT IMPACT.

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 …

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