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 Spark Therapeutics. Read the press release in its entirety here. Investigational SPK-8011 moving to Phase 3 As of the July 13 data cutoff, 12 participants in the Phase 1/2 trial have received a single administration of investigational SPK-8011, including two at a dose of 5×1011 […]
Dear Addy, I’ve heard friends in the bleeding disorders community speak about depression and other mental health concerns. I want to support them, but I’m not sure how to approach this sensitive topic. Can you offer guidance on how to have a conversation with friends about mental health? Signed, Caring Friend Dear Friend, Thank you […]
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’m feeling and how to best support me? I don’t want to burden them with my issues. Signed, Supportive […]
The past week has seen a flurry of news on the ACA front. We’ve summarized some of the latest developments for you here. On July 10, the US Centers for Medicare and Medicaid announced it will further reduce funding for navigators. Navigators are individuals or organizations that are trained to help Americans buy insurance in the ACA […]
On June 7th, 2018, Genentech announced a new web portal for patients and caregivers intended to provide timely and accurate information on targeted serious adverse events of interest for HEMLIBRA. Earlier this year, Genentech launched a similar site specifically for health care providers. In announcing the launch, Genentech stated “This website is meant to serve […]
Earlier this year, we opened applications for a ten-week policy and government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Alexandra Abreu Boria and Catherine Anderson, who are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in […]
Dear Addy, How do I approach my doctor with questions on new research about a treatment for my bleeding disorder? There are so many novel treatments under development or newly available! I want to make sure that my doctor considers my input and will work with me to select the treatment that best serves my […]
Dear Addy, How can I maintain relationships with my legislators after participating in an advocacy day? Signed, Building for the Future Dear Builder, It’s great to hear you are thinking ahead to what’s next! Building relationships with your legislators is an important advocacy strategy and there’s a lot you can do from home and throughout […]
When Scarlett was diagnosed with platelet storage pool disorder in 2011 the doctors told me she wouldn’t be able to play most sports. As she went from toddlerhood to adolescence the restrictions seemed endless and it felt like she was never going to find any after school activities that she would enjoy. It was obvious […]
HFA was informed by Genentech on March 26, 2018, that a total of five patient deaths have occurred while the patients were using Hemlibra (emicizumab-kxwh). Genentech has little information that they can presently share about the circumstances surrounding the most recent patient deaths; however, Genentech could confirm that the patients had received Hemlibra as part of compassionate use and expanded patient access. Genentech has a Medical Communications line at 1(800)-821-8590 for patients, concerned community members, and healthcare providers who seek further information. […]
Dear Addy, I’ve heard writing an op-ed for my local newspaper is a good way to spread awareness about bleeding disorders. I’d like to submit a piece during Bleeding Disorders Awareness Month. Can you offer tips for submitting my story? Signed, Ready-to-Write Dear Writer, Writing an op-ed or opinion piece is a great way to […]
My family has very quiet about our family history with hemophilia. I was 2 years old when my grandfather passed away, so I knew very little about what he went through or what it meant to be a carrier, other than the result could be having a son with hemophilia. I was excited when we […]
Disclaimer: At HFA, we value all opinions. This blog only reflects only the opinion and experiences of the individual mother/writer. We encourage you to talk with your children about a school safety plan, and have provided a resource at the end of this blog entry. ________________________________________ Around 11 AM, on April 20, 1999, in Littleton, […]
Does life ever make sense? Do we really know the answers to why things actually happen? Losing my daughter, Sydney, nine days shy of her second birthday due to SUDC (Sudden Unexplained Death in a Child), pretty much means there is no answer to why. But my family decided to welcome another child into the […]
The following is an excerpt from an article in Medical News Bulletin. Read the full article here. Researchers at Spark Therapeutics and Pfizer tested the safety and efficacy of a new hemophilia gene therapy vector for the treatment of hemophilia B. The body’s ability to stop bleeding and repair damaged blood vessels depends heavily upon […]
Note: The following is an excerpt from a press release from Octapharma USA. Read the full press release here. Octapharma Partnership with Mountain Climber will Culminate with Release of Documentary Bombardier Blood Later This Year Mountain climber Chris Bombardier of Denver, Co., became the first hemophiliac to climb the Seven Summits of the world on […]
When I committed to writing this week’s blog, I had no idea what I would blog about until I went to see the movie ‘Wonder.’ Wonder is about a boy named Auggie who was born with a facial disease called mandibulofacial dystosis, also known as “Treacher Collins syndrome.” Due to Auggie’s medical needs, which require the […]
Study Shows Sexual Intimacy Correlates With More Bleeds The following is an excerpt from Hemophilia News Today. Read the entire article here. Researchers report that hemophilia interferes with patients’ sexual activity and is linked to worse health status. The study titled “Sexual Health in Patients with Hemophilia; The Insights from the Patient Reported Outcomes, Burdens and Experiences […]
Note: The following is edited from a press release from Sanofi. Read the full press release in its entirety here. Sanofi and Bioverativ Inc., a biopharmaceutical company focused on therapies for hemophilia and other rare blood disorders, have entered into a definitive agreement under which Sanofi will acquire all of the outstanding shares of Bioverativ for $105 […]
Puerto Rico, Isla del encanto, conocida por sus bellas playas, gente amigable y amable, en donde se baila la mejor salsa y se degustan los mejores sabores caribeños. Arropada por el Mar Caribe y el Océano Atlántico. En donde se habla español y es un territorio ligado a Estados Unidos como Estado Libre Asociado y […]
Below, we’ll introduce you to three such people: Trevor Dunn, a young man with von Willebrand Disease, Dawn Evans, an adult woman who is asymptomatic carrier of Hemophilia A, and Barry Haarde, an adult male with severe Hemophilia A. All of them have discovered a form of physical activity that is enjoyable and adaptable to […]
Note: The following is edited from a press release from Alnylam. Read the full press release in its entirety here. Alnylam Pharmaceuticals, Inc., an RNAi therapeutics company, and Sanofi announced today a strategic restructuring of their RNAi therapeutics alliance to streamline and optimize development, and commercialization of certain products for the treatment of rare genetic diseases. Specifically, Alnylam […]
Note: The following is an excerpt from an article by Rare Disease Report. Read the full article in its entirety here. On Jan. 4, Catalyst Biosciences announced the initiation and open enrollment of the Phase 2 part of its Phase 2/3 program of marzeptacog alfa (activated) (MarzAA), a highly potent, subcutaneously administered Factor VIIa therapy in development for the treatment […]
When I got married 19 years ago, I never thought I would be a foster parent to over 40 children with special needs. It never occurred to me that I would have the blessing of being a stay-at-home mom for 14 years. I never would have thought I would end up with six forever children […]
Swimming is often recommended as an ideal form of exercise for people with bleeding disorders for a few different reasons. To begin with, swimming allows one to strengthen their muscles in a way that doesn’t put weight on the joints, and therefore reduces the likelihood of bleed due to impact or pressure. It also enables […]
By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits! Our guest on this podcast is Karen Sullivan, retired professor of Health/Fitness at Marymount University. Tune into hear Karen discuss how to build sustainable fitness habits and how to get back on […]
Click here for the combined issue statement from the Coalition for Hemophilia B, the Hemophilia Federation of America, the National Hemophilia Foundation and the Hemophilia Alliance supporting bi-partisan Alexander-Murray Legislation. (Full text available in pdf and below) People with Hemophilia and Other Bleeding Disorders Urge their Senators to Support Alexander-Murray Market Stabilization Legislation Senators Lamar Alexander […]
By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits! Listen in to learn about the benefits of hitting the weight room from Michael Zolotnitsky, Doctor of Physical Therapy. As a teenager, Michael made a conscious lifestyle change to […]
By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits! Tune in to in to hear about yoga, weight training, to help you live better with a bleeding disorder.
By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits! Listen in as holistic Nutritionist Jenny Helman offers invaluable tips on how to create and stick to a healthy diet, and dispels common nutrition myths and misconceptions.
Sign up for E-mails, Dateline Magazine, and other ways to stay connected.