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News & Perspectives

2010 State Legislative Preview: PENNSYLVANIA

October 10, 2009

The Keystone State continues to address passage of its Treatment Standards bill. The State House passed its version of the measure 197-0. The bill remains mired in the Senate where the state Republicans hold sway. 2010 looks to focus on moving the measure further on down the legislative path towards Governor Rendell’s desk. Rendell has […]

Capitol Gains

October 9, 2009

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” –Margaret Mead I found myself looking around for this quote online this morning. I was truly fortunate to have shared this past weekend with a handful of young men all in their […]

It’s only gonna cost $829 billion…

October 8, 2009

Released October 7, the CBO score of America’s Healthy Future Act of 2009 outlines the cost of Chairman Max Baucus’ controversial bill.  Chairman Baucus believes “This legislation is a smart investment on the federal balance sheet, and it’s an even smarter investment for American families, businesses and our economy.”  The Senate Finance Committee will hold an […]

Montana mounts fight on Rx Drug Costs

October 7, 2009

Faced with spiraling prescription drug costs in its employee health plan, the state of Montana has devised a new approach that should save $6 million next year and may be a first of its kind nationwide. The new prescription drug coverage, which takes effect Jan. 1 for the 32,000 people covered by the state employee […]

Alex & Jim

October 6, 2009

Jim and Alex are two young men with hemophilia.  They talk about the positive impact of camp and the importance of advocating for the bleeding disorders community and themselves.

Destiny’s Story: They Need to Hear from Us

October 3, 2009

I had the honor of going to Washington D.C to visit our Capital. It was everything you would image it would look like. It was a huge building looking statuesque amongst all the other buildings. Standing strong and regal, it was ominous and intimidating. Once inside I could hear the echoes of footsteps and ghostly whispers.

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

 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

October 1, 2009

  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

September 28, 2009

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 […]


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