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AFFIRM: The Next Generation of Leaders

AFFIRM (Adult Fellowship for Integrating Responsible Mentors) is a three- year leadership development program targeting men ages 25 to 35 from around the world . In its second term, ten men have demonstrated dedication and leadership within their local community to improve the lives of those with a bleeding disorder (see list below). Twice a […]

Hemophilia Patients Urge NIH & IRB To Stop Ineffective Hepatitis C Trial

Below is a letter from People with Bleeding Disorders and HCV, to the Institutional Review Board (IRB) and National Heart, Lung, and Blood Institute (NIH) office recommending to end recruitment of a clinical study (pINF+RIBA+Telaprevir).  People with Bleeding Disorders feel that this study is out-dated and mediocre therapy for Hepatitis C (HCV). ——————————————————— TO: Institutional Review Board, […]

Everyday Health: Dr. Sanjay Gupta Explains Hemophilia Myths & Facts

During Hemophilia Awareness Month we reached over 300K people on social media by posting a fact-a-day about bleeding disorders. Dr. Sanjay Gupta’s staff from Everyday Health, saw our efforts and reached out to us about working together on a piece about hemophilia. In honor of World Hemophilia Day, this informative article launched. __________________________________ Title: Myths […]

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Dear Addy: Lifetime Caps vs. Annual Caps

                Dear Addy, I know “Obamacare” eliminated lifetime caps on January 1, 2014, but are there still annual caps on healthcare costs? Capped-Out __________________________________ Dear Capped-Out, Happily the answer is no, as of January 1, 2014. Actually, it was on September 23, 2010, that the Affordable Care Act […]

Positive Life: Barry Haarde Road Tripping Again

(Positive Life): Bob Leahy: Barry. You’re off on another trip. Tell us about this one. Barry Haarde: This year’s ride is the shortest but fastest ride of the three and departs from L.A. on Easter Sunday and rolls all the way to Savannah, GA, which amounts to about 2,900 miles over a period of 27 days, […]

Grifols Donates Coagulation Medicines to World Federation of Hemophilia

Grifols announced that it will donate up to 20 million units of coagulation therapies in each of the next three (3) years to the World Federation of Hemophilia (WFH). Grifols has been a proud supporter of the WFH and its noble efforts for nearly a decade – and this unprecedented product donation represents its largest […]

Reuters: Biogen Hemophilia Drug Prices On Par With Older Therapies

Reuters – Biogen Idec Inc is pricing its newly approved long-acting hemophilia drug, Alprolix, to cost U.S. patients, and insurers, about the same per year as older, less convenient therapies whose price can reach about $300,000 annually. The move could pressure rivals such as Pfizer Inc to lower prices for existing hemophilia treatments, which provide […]

FDA: Hemophilia Treatments Have Come a Long Way

Gone are the days when a hemophilia diagnosis meant you could not live a normal life. Now more treatments are approved by the Food and Drug Administration (FDA), and people with the condition can better manage bleeding. That’s good news as thousands observe World Hemophilia Day on April 17, 2014. Hemophilia is a rare bleeding dis- […]

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Grilled Pineapple Pico de Gallo with Plantain Chips

If you had the opportunity to join us at HFA’s Symposium 2014 in Tampa Florida, we hope you stopped by the FitFactor Wellness Lounge to say hello and take advantage of the opportunities to learn more about a variety of wellness practices.  One of the features at the Wellness Lounge was a healthy cooking demonstration given […]

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Thousands of Families Observe World Hemophilia Day

Today (April 17th),  tens of thousands of families across our nation and around the world will recognize World Hemophilia Day to raise awareness of bleeding disorders. “World Hemophilia Day brings public awareness about bleeding disorders and encourages the development of improved treatment,” said Kimberly Haugstad, Executive Director of Hemophilia Federation of America (HFA). “Worldwide, 1 in 1,000 […]

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Assisting and Advocating for the Bleeding Disorders Community