Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
The following is an excerpt from a press release from Takeda. Read the press release in its entirety here. Children鈥檚 National Hospital and Takeda Pharmaceutical Company Limited announce the creation of the Rare Disease Clinical Activity Protocols (Rare-CAP) program, which will establish a networked system for the development, dissemination and curation of protocols to help […]
The following is an excerpt from a press release from Genentech. Read the press release in its entirety here. Genentech, a member of the Roche Group, announced data from the primary analysis of the Phase III HAVEN 2 study evaluating Hemlibra庐聽prophylaxis in children younger than 12 years of age with hemophilia A with factor VIII […]
Dear Addy, I have a bleeding disorder and two siblings who are unaffected. My siblings often ask how they can help or what they can do to support me. How do I share with them what I鈥檓 feeling and how to best support me? I don鈥檛 want to burden them with my issues. Signed, Supportive […]
Dear Addy, My eleven-year-old son recently shared that he鈥檚 being bullied at school because of bruising caused by his bleeding disorder. How can I help him educate his classmates about hemophilia and prevent future bullying? As much as I want to protect my son, I also know that I need to empower him to […]
Time moves so quickly. As adults we blink and a year has passed. As kids, we couldn鈥檛 wait to be adults. I feel like it was just yesterday that we were adjusting to life with one itty-bitty baby, with a chronic condition. Now we are in a routine, his disorder is well managed, and he […]
For the past four years I have been participating in Hemophilia of South Carolina鈥檚 legislative days. During this annual event, I meet with our local representatives to share my experience of raising a child with a bleeding disorder and why it is important to support state programs that support our community. In prior years, I […]
(CNN)聽— As a school nurse in Rochester, Michigan, Ronda Harrison has more than 15,000 students in 23 buildings under her care. She works out of the district’s administrative offices and spends her days giving PowerPoint presentations to educators and communicating with parents over the phone. “[It is] scary the fact that I’m responsible for so […]
Ft. Lauderdale, Florida – January 2009 – Matrix Health Group is pleased to announce the release of a new children’s activity book entitled Time for Fun!. The book’s focus is to educate children up to the pre-teen years about the many facets of life with a bleeding disorder. Featuring numerous activities in a colorful and […]
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