Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
We’ve introduced you to Alexandra and Catherine, our summer Policy interns. They have been busy in D.C., attending Congressional hearings and learning the ropes of working for a national organization. During their second week, they experienced first-hand the planning and execution of our fifth annual Patient Fly-In. Read their experiences through their eyes on how […]
This post is written as a special shout-out to my husband; a hemo dad, and all the other caregivers who have patience just like my husband Shane. I鈥檓 pretty lucky to have a husband who is very involved in Maddox鈥檚 infusions. My husband, Shane, gives Maddox his infusions three times a week. As a full-time […]
The following is a summary of a press release from Catalyst Biosciences by Dr. Robert Sidonio, a trusted medical advisor. Read the full press release here. On June 18, Catalyst Biosciences provided an update of the progress from its Phase 陆 trial investigating the use of FIX variant product, called CB 2679d/ISU304, which is a […]
Grifols Biologicals is initiating a voluntary product recall of one lot of Profilnine. Grifols Biologicals has determined there is low risk to the patient associated with this issue; however, Grifols Biologicals is requesting the lot to be returned out of caution. Therapy Plasma Product NDC Number Lot Number Size Packaging Expiration Date 68516-3208-2 A1PBB00072 1000 […]
On June 12,2018, we hosted our 5th Annual Patient Fly-In in Washington, DC聽alongside an online聽Virtual Hill Day. . With that in mind, patient representatives asked Senators and Representatives to protect affordable coverage for people with pre-existing conditions, ensure that insurance plans provide meaningful coverage and an appropriate scope of health benefits; protect people against potentially […]
Dear Addy, I saw a post on HFA鈥檚 Facebook page about a Virtual Hill Day on June 12. Can you tell me more about this and how people outside of D.C. can be involved? Signed, Virtual Visitor Dear Visitor, Every year, HFA hosts a fly-in for members of the bleeding disorders community to come to […]
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聽are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in […]
The following is an excerpt from a press release from Genentech. Read the entire press release here. Genentech, a member of the Roche Group, announced the U.S. Food and Drug Administration has accepted the company鈥檚 supplemental Biologics License Application and granted Priority Review for HEMLIBRA 聽for adults and children with hemophilia A without factor VIII […]
Soy Sylvia Verardi y vivo en la isla de Puerto Rico. Mucha gente no sabe esto, pero Puerto Rico es un territorio estadounidense en el Caribe; est谩 bastante cerca de las Islas V铆rgenes de los Estados Unidos. Somos un Estado Libre Asociado y el a帽o pasado pasamos por dos huracanes, Irma y Mar铆a, que nos […]
Every year at Symposium, there is some special moment that defines that year鈥檚 event for me. As we kick off our 2018 event tomorrow, I鈥檓 reflecting back on my favorite memories from the last five years of Symposium: 2013: Frisco, TX (I actually have two favorite memories from this year.) 聽 This picture encapsulates our […]
Dear Addy, I鈥檓 attending HFA鈥檚 Symposium next week and I鈥檇 like to gather information about personal and legislative advocacy to bring back to my community. What sessions do you recommend I attend? Signed, Planning Ahead Dear Planner, It鈥檚 great to hear you will be attending Symposium in Cleveland! This year, we have expanded our advocacy […]
Some of us love exercise.聽 Some of us (me!) hate it but love it when you鈥檙e done.聽 What do you find to be the hardest part of exercising?聽A lot of times it鈥檚 finding the time.聽As moms we鈥檙e pulled in a thousand different directions all throughout the day.聽 Between jobs, kids, and spouses, there is never […]
The importance of physical activity for everyone鈥檚 health, particularly those of us with bleeding disorders, cannot be overstated. Exercise builds lean muscle mass, manages our body weight and improves our heart and lung efficiency. Participating in a variety of physical activities from weight bearing exercises to cardio training is important as each one offers different […]
Dear Addy, How can I maintain relationships with my legislators after participating in an advocacy day? Signed, Building for the Future Dear Builder, It鈥檚 great to hear you are thinking ahead to what鈥檚 next! Building relationships with your legislators is an important advocacy strategy and there鈥檚 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,聽that聽a聽total of five聽patient deaths have聽occurred聽while聽the patients were聽using聽Hemlibra聽(emicizumab-kxwh).聽Genentech has little information that they can presently share聽about the circumstances聽surrounding the聽most recent聽patient聽deaths; however, Genentech could confirm that the patients聽had received聽Hemlibra聽as part of聽compassionate use and聽expanded patient access. Genentech has a聽Medical Communications line聽at聽1(800)-821-8590聽for patients, concerned community members, and healthcare providers聽who聽seek further information. […]
Dear Addy, I鈥檝e heard writing an op-ed for my local newspaper is a good way to spread awareness about bleeding disorders. I鈥檇 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 […]
[Reposted from January 16, 2018] In the past few weeks, we have received many inquiries regarding the scope of the injunction Shire is seeking in its lawsuit against Genentech/Roche. Certain information has become public during this period that enables NHF and HFA to provide some limited guidance as to the scope of the injunction that […]
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 […]
Not only is March Bleeding Disorders Awareness Month, but it has also been designated National Nutrition Month! Take this time to evaluate your current eating habits. How many healthy foods are you eating consistently? What are you lacking? Do you eat too much of one thing? There is always room for improvement when it comes […]
Dear Addy, I鈥檝e seen HFA鈥檚 Facebook posts about Bleeding Disorders Awareness Month. Can you tell me more about it and how I can get involved? Signed, Attentive Advocate Dear Attentive, For more than 30 years, the bleeding disorders community celebrated March as the unofficial Hemophilia Awareness Month. In 2016, this designation become official when the […]
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, […]
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 […]
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 […]
Functional training exercises train your muscles to work together and prepare you for daily tasks by simulating common movements you might do at home, at work or in sports. By using basic movement patterns like pushing, pulling, squatting and carrying, you build stability, strength and mobility that will in turn help with your daily movements. […]
Dear Addy, I鈥檓 participating in an Advocacy Day with my local bleeding disorders organization this month. I have limited experience with legislative advocacy and it鈥檚 been a long time since I took a civics class! Could you share insight on what to expect and how to prepare? Signed, Proactive Participant Dear Participant, This is a […]
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鈥檚 blog, I had no idea what I would blog about until I went to see the movie 鈥榃onder.鈥 Wonder is about a boy named Auggie who was born with a facial disease called聽mandibulofacial dystosis, also known as 鈥淭reacher Collins syndrome.鈥 Due to Auggie鈥檚 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聽hemophilia聽interferes with patients鈥 sexual activity and is linked to worse health status. The study titled 鈥淪exual Health in Patients with Hemophilia; The Insights from the Patient Reported Outcomes, Burdens and Experiences […]
Dear Addy, I’m already experiencing problems with my insurance in the new year. Where can I go to report these issues? Signed, New Year, Old Issues Dear New Year, You are not alone. HFA regularly hears from community members with concerns about access to care due to limitations or mandates set by their insurance company. […]
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