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FAQ: Hemophilia Memorial at the National Memorial AIDS Grove

  How did the Hemophilia Memorial at the National AIDS Memorial Grove come to be? In 2016, National AIDS Memorial Grove reached out asking for support for their “Surviving Voices” project. This is a multi-year oral history project meant to ensure that stories and lessons of the AIDS epidemic are captured, curated, and retained for […]

Intern Introspective: Fly In Recap

Earlier this summer, we introduced you to La’Brittinee and Paul, our summer Policy interns. They have been busy all over DC, attending Congressional hearings and learning the ropes of working for a national organization. During their first week, they got to experience first-hand the planning and execution of our 4th Annual Patient Fly-In. Below are […]

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Remembering Ryan White 26 Years Later

Ryan White died at the age of 18 on April 8, 1990. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears that the virus would spread to other children. Learn more about Ryan’s legacy by clicking […]

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Infusing Love: A Painful Legacy

I attended my first, big, national hemophilia conference in 1997.  My son, Julian, was two years old and I was scared to death. The enormity of it was almost too much!  The exhibit hall with giveaway after giveaway (I had no idea that my son was seen as a dollar sign to some ), huge […]

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ABC’s Secrets and Lies Dishonors Hemophilia Patients

ABC’s Secrets and Lies Dishonors Thousands of Americans Living with Hemophilia Calls manageable hereditary condition “nasty byproduct of incest.” WASHINGTON, DC — The Hemophilia Federation of America (HFA) was appalled to learn that the American Broadcasting Company (ABC) show Secrets and Lies referred to hemophilia as a “nasty byproduct of incest” in the episode “The Sister” (S01, E04) that […]

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Infusing Love: A Community’s Legacy

[glossary_exclude] This past Monday marked the 26th annual World AIDS Day.  James W. Bunn and Thomas Netter, two public information officers for the Global Programme on AIDS at the World Health Organization, conceived World AIDS Day in 1987. Since then, messages and proclamations that raise awareness and call for action for an AIDS-free generation are […]

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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2008: Costs Remain Problematic

Title: Higher Lifetime Insurance Caps Needed for Chronic Conditions By: Glenn Mones  Source: PPTA Karen and George Bishop live in Findlay, Ohio, with their 16-year-old son, Michael, who has hemophilia B (factor IX deficiency). Michael is allergic to factor IX and needs high doses of an expensive bypassing agent to control his bleeding. Even with treatment, Michael has […]

2007: Benefits of Prophylaxis Recognized

Title: Prophylaxis versus Episodic Treatment to Prevent Joint Disease in Boys with Severe Hemophilia By: Marilyn J. Manco-Johnson, M.D., et. al. Source: New England Journal of Medicine  Before the development of cryoprecipitate, a plasma fraction that contains concentrated factor VIII, boys with severe hemophilia A had a diminished life expectancy. These children are at risk for many types […]

2006: A Legacy of Tainted Blood

Title: A Legacy of Tainted Blood By: Steve Sternberg Date: July 11, 2006 Source: USA Today Like many young men, Joshua Lunior is searching for his dream girl. He knows she won’t be easy to find, because Lunior, 24, comes with some challenging baggage. He belongs to an all-but-forgotten generation of 10,000 people with hemophilia who contracted […]

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Assisting and Advocating for the Bleeding Disorders Community