Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
As parents, we are always talking about the safety of our kids, families, cars, food, neighborhoods, churches, malls etc. Let’s face it: our world is not as “safe” as it used to be, except when it comes to hemophilia! As a mother of a very active two-year-old, a sister of a stubborn 40-year-old, and the niece […]
With Father’s Day around the corner, now is the time to start thinking up fun, active ways to spend time with your dad. This year, add a new activity to do to make Father’s Day special, like climbing a mountain or going bird watching. Being physically active with your dad (and your family in general), […]
Earlier this year, we opened applications for a ten-week policy & government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! La’Brittinee & Paul are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]
Novo Nordisk recently announced that the U.S. Food and Drug Administration (FDA) has approved the Biologics License Application for REBINYN® (Coagulation Factor IX (Recombinant), GlycoPEGylated) for the treatment of adults and children with hemophilia B. Novo Nordisk expects to launch REBINYN® in the U.S. in the first half of 2018. For more info on REBINYN, […]
Nine years ago, I was blessed with my oldest son Zachary. With each passing day, he grows into an exceptional young man with love and compassion for everyone he meets. His smile and dimples are infectious and can melt any mother’s heart. Zachary had been the only child for four years when my husband and […]
Dear Addy, I saw a lot of activity on social media last week about HFA’s Virtual Hill Day and Patient Fly-in. Can I still participate? Signed, Always an Advocate Dear Advocate, YES! On May 24th, HFA organized a Virtual Hill Day, in conjunction with meetings on Capitol Hill, to encourage community members nationwide to contact […]
My life was flipped upside down nearly 3 weeks ago when I became a hemophilia mom. To say that I was shocked is a true understatement. What I thought were little bruises because I had shoved my son Maddox into his bumbo seat, turned out to be a disorder that would affect my baby […]
On May 24, 2017, we hosted our 4th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. As they consider HR 1628, the American Health Care Act (AHCA), the Senate has indicated that they intend to start from scratch on health reform and they need to hear from their constituents when crafting their plan. […]
Washington, DC– Tomorrow, Hemophilia Federation of America (HFA) is hosting a Patient Fly-In and Virtual Hill Day for the bleeding disorders community. As questions surrounding health reform move to the Senate, patients will meet with their Senators, ensuring that their needs are represented. Patients will also participate in a Virtual Hill Day by calling, […]
Every hemo mom has the day she must send her child off on an overnight school trip, trusting that she has done everything she can to prepare her child for the responsibility of being on their own. My time came a few weeks ago when my son went to Orlando with his Sing Out […]
Dear Addy, I’m applying for life insurance, but I’m either ineligible or being told I have to pay three times the normal rate because I have hemophilia. Is this typical with a rare disorder, and is there anything I can do about it? Signed, Planning Ahead Dear Planning, Unfortunately, as you’ve found, your health status […]
Dimension Therapeutics announced it will discontinue the development of DTX101, an investigational AAVrh10-based gene therapy product in development for the treatment of moderate/severe-to-severe hemophilia B. The decision followed the review of the emerging DTX101 Phase 1/2 clinical study data, including the data as of the beginning of May 2017, and the observation that the data would not meet […]
Sangamo Therapeutics, Inc. and Pfizer Inc. recently announced an exclusive, global collaboration and license agreement for the development and commercialization of gene therapy programs for Hemophilia A, including SB-525, one of Sangamo’s four lead product candidates, which Sangamo expects will enter the clinic this quarter. Click here to read the full press release from Sangamo Therapeutics.
uniQure recently presented data at the American Society of Gene and Cell Therapy (ASGCT) 20th Annual Meeting in Washington, D.C. on successful repeated hepatic gene delivery with their AAV5 vector following a proprietary immunoadsorption procedure in non-human primates (NHPs). The results described successful sequential transduction with the two reporter transgenes and highlighted the progress made in readministration protocols […]
Kedrion Biopharma announced a return to normal supply levels of Koāte in the 1000 vial size and a series of large-scale improvements to their overall operations following a temporary period of limited availability of product. Click here to read the full contents of letter provided by Kedrion Biopharma regarding this matter.
Back in the “old days” before prophylaxis (prophy), hemophiliacs were treated on demand when they had a bleed. Max is just old enough to fall into that category so he didn’t switch to prophy until he was five years old. By then he had already had enough bleeds in his left ankle that the damage […]
When ABC premiered, “Speechless” last fall, I wasn’t sure if it would meet my expectations. Would it show special needs parenting and family life in a realistic, often sarcastic way, or would it have the feel of an afterschool special? I’m happy to say it’s readily become one of a handful of shows we watch […]
uniQure recently received the designation of a “priority medicine” from the European Union for a potential gene therapy treatment for Hemophilia B. From the press release: uniQure N.V. (NASDAQ:QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, today announced that AMT-060, its proprietary, investigational gene therapy in patients with severe […]
With summer just around the corner, we’ll soon be able to pull out those grills for our favorite outdoor meals. Whether you’ve got a taste for meat, fish, seafood, tofu or vegetables, grilling is one of the healthier cooking methods. Cooking food on a grill allows excess fat to drip away from the food, without […]
Dear Addy, I attended Symposium in April and gained a lot from the advocacy sessions. I want to incorporate what I learned at Symposium into my regular routine. What recommendations do you have for making advocacy an everyday activity? Signed, Maintaining the Momentum Dear Momentum, Thanks for attending HFA’s Symposium last month in Providence. It’s […]
As parents of a nearly twenty five year old son, my husband George and I have enough to write a book about being the parents of a child with severe hemophilia B. There are so many ups and downs raising Michael over the years. Our most recent up and down has been the transition of […]
The Terry Lamb Health and Wellness Award is award is for exceptional commitment to supporting HFA in its national efforts to encourage health, nutrition and wellness behaviors in the bleeding disorders community. Terry Lamb had severe hemophilia, was an active member of the bleeding disorder community, and was a respected leader. Terry grew up in […]
Each year, at the HFA Symposium, we recognize the tremendous volunteerism in the bleeding disorders community. The Michael Davon Community Service award is for extraordinary service to the community via one’s national or global volunteerism and charitable giving. Michael Davon was a New Englander who was integral to the inception of HFA. He was described […]
Rose Bender is a 20-year old sophomore at Yale University living with severe hemophilia A. She was 9 months old when her family first heard about hemophilia. Her bleeding at the time was so severe that she needed a whole blood transfusion, cryoprecipitate, and fresh frozen plasma just to stay alive. Volunteering and giving back […]
The bleeding disorders community has been built on the tireless advocacy work of volunteers. Today, we recognize two gentlemen and Blood Brothers who were mentors, friends, and inspiring advocates. We were honored to recognize Ellis Sulser and John Reed during our recent Symposium. The Ron Niederman Humanitarian Award recognizes extraordinary and inspirational service to the […]
Each year, the HFA staff recognizes the national spirit and remarkable volunteerism for HFA with the #bleedingdisorders community. As #VolunteerAppreciationMonth comes to a close this week, we will be recognizing award winners from #HFA2017. Today, we remember Star Tyree, a long-time HFA supporter, volunteer, and friend. Starlyn (Star) Tyree was a former Executive Director […]
In conjunction with Volunteer Appreciation Month, we are highlighting volunteers who help to make the bleeding disorders community inclusive and informative. Today, we are proud to recognize one of our recent award winners at our 2017 Symposium, Darcy Zwier! The “It Takes a Village” award is provided to an individual who goes above and beyond in […]
I need to send a big hug and thank you to all the bleeder moms who have supported me. I thank you for the endless support you continue to give me. But I especially need to send a special hug to the one mom who has been there to pick me up these last […]
Global Drug Manufacturer CSL Behring announced last week it’s recognition of World Hemophilia Day by sharing news of a donation of more than 4 million international units (IUs) of its medicines to treat hemophilia A and/or von Willebrand Disease to the WFH Global Alliance for Progress (GAP) Program. To read the full release from CSL Behring, […]
Dear Addy, What is the HFA Community Research Portal and why is it important to me? Sincerely, Research Meets Advocacy Dear Research, The HFA Community Research Portal is an exciting new research project that will provide individuals with bleeding disorders the chance to directly engage in meaningful research projects. The HFA Community Research Portal is […]
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