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Rare Disease Day 2010

By Michelle Pascucci Rare Disease Day in the United States began in 2009 and the plans for Rare Disease Day in 2010 are taking off.  The National Organization for Rare Disorders (NORD) has launched a website to follow the events going on around the world on February 28, 2010.  The goal is to raise awareness […]

Kakkis Every Life Foundation Art Contest

By Michelle Pascucci The Kakkis Every Life Foundation is having an art contest for individuals living with rare disorders.  The goal is “to empower artists affected by Rare Diseases to express their unique struggle with a rare disease.” Two Visa gift cards per age group and a Flip Video camera will be given away.  This […]

NORD's Politico advertisement on ending lifetime and annual caps

The National Organization for Rare Disorders (NORD) ran an advertisement today featuring President Obama’s promise to “prohibit insurers from imposing lifetime limits on benefits and restrict the use of annual limits.”  HFA has received a number of inquiries concerning the “annual limits” language proposed in the Senate health care reform bill.  Ambiguity in the proposed language has prompted […]

All crossed up

The Hemophilia Federation of America was contacted this week by the staff at the National AFL-CIO about an ongoing labor issue. About 100 employees at the American Red Cross’ division of Blood Services in and around Philadelphia are on strike. The majority of these workers drive the bloodmobiles the American Red Cross uses to support […]

Rolling Snake-Eyes

Expiration of COBRA Subsidy: Millions of Uninsured Workers and Their Dependents Are at Risk; Many Will Lose Their Subsidy as of December 1, 2009 Courtesy: Families USA Americans who lose (or have already lost) their jobs are about to be dealt another blow: the expiration of the subsidy that allowed many of them to retain […]

Barry, A True Blood Brother

Barry has hemophilia, HIV, and hepatitis C.  He discusses the realities of being diagnosed HIV positive as a teenager and the many challenges he has faced throughout his life.  Barry hopes by sharing his story he will empower others to share theirs.

Several states plan to push for more Regulation of Pharmacy Benefit Managers (PBM’s)

With increased pressure on medical costs, many states have chosen to rely on PBM’s to help administer prescription drug benefits for state’s Medicaid and Medicare programs. A controversial issue in that cost goes down, but access and product choice are also severely limited. If cost is the only concern, then well regulated PBM’s can be […]


Living With A Bleeding Disorder

Features: Terry Lamb, Karl Weixler, Tera Griffith & Tye Cowans.  These four individuals share what life is like being a part of the bleeding disorders community.

States begin to address medical debt

Paying for health care is becoming increasingly difficult for American families. Fewer workers are receiving health coverage through their jobs, and those who do have job-based coverage face rising out-of-pocket costs. Not surprisingly, more families are going into debt trying to pay for the health care they need. The health reform proposals that are currently […]

Puritan’s Pride: Massachusetts marks first anniversary of prescription drug marketing bill

 A year after the Bay state became the first place in this country to pass a comprehensive bill addressing prescription drug marketing, the commonwealth is taking stock. The bill’s impact cannot be understated for its impact on industry. Two major trade organizations, PhRMA and AdvoMed, the people who sell prescription drugs and medical devices have […]

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