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Laughing Away the Pain

I was diagnosed with severe Hemophilia A at birth in New Jersey. During my childhood, I moved around often with my family. Needless to say, these experiences have taught me how to adapt. I have been treated at several different hemophilia treatment centers, and every time I changed my center, I had to learn a […]

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CDC Six-Year Inhibitor Study Released

The journal Haemophilia has published the results of a six-year study called the Hemophilia Inhibitor Research Study (HIRS) that was designed to test the feasibility of conducting national monitoring for inhibitors among people with hemophilia in the United States. The study collected blood specimens on a regular basis from study participants, which were tested at […]

CDC: Report on the Universal Data Collection (UDC) Project

From 2005-2009, federally funded Hemophilia Treatment Centers (HTCs) participated in the CDC’s Universal Data Collection (UDC) to help collect vital health information from about 27,000 patients in the bleeding disorders community. Report Highlights from the UDC Report This surveillance report focuses on UDC data collected during years 2005 through 2009. A total of 44,239 visits were made […]

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Dear Addy: Informed Consent

Dear Addy, The last time I took my son to his HTC I was asked to participate in a survey. I didn’t have time to read the consent form because my son wasn’t feeling well that day, so I asked if I could complete the survey at the next visit. The nurse told me I […]

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 and Facts About Hemophilia […]

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How a Liver Transplant Changed My Life

One of the most important things you can do for your health is to have a proper diet. What you put into your body affects how you look and feel. Maintaining a healthy weight is especially important for individuals with a bleeding disorder. Being at a healthy weight can reduce the number of bleeding episodes you experience, […]

AFFIRM

AFFIRM: The Next Generation of Hemophilia 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, […]

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, […]

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 hemophilia 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 […]

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