Receive Our Newsletter

Ryan White_Anniversary

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 […]

cazandra_momsblog_safety

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 […]

press_release_fb

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 […]

Infusing Love_Community Legacy 2

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 […]

3-24-2000s

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 […]

1998_RickyRayPassed

1998: Ricky Ray Relief Fund Act Passed

 *Photos courtesy of Corey Dubin Ricky Ray Hemophilia Relief Fund Act of 1998 PUBLIC LAW 105–369—NOV. 12, 1998 [H.R. 1023] To provide for compassionate payments with regard to individuals with blood- clotting disorders, such as hemophilia, who contracted human immunodeficiency virus due to contaminated antihemophilic factor, and for other purposes. Be it enacted by the […]

March 22_lawsuits

Mid-Late 1990s: A Period of Action for Hemophilia Community

_____________________________________ Title: At Annual Meeting, Hoping To Heal Hemophiliacs’ Rift Subtitle: Some Want Retribution For Aids; Others Want To Move On. By: Donna Shaw, INQUIRER STAFF WRITER Date: October 12, 1995 Source: The Philadelphia Inquirer There is much that keeps Michael Carlin alive in the memories of his family. There is his poetry. His music. […]

Page 1 of 3123

Assisting and Advocating for the Bleeding Disorders Community