Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
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 […]
On April 16, 2017 Genentech announced interim results from the Phase III HAVEN 2 study evaluating emicizumab prophylaxis in children less than 12 years of age with hemophilia A and inhibitors to factor VIII. According to this Genentech’s press releases, “interim analysis after a median of 12 weeks of treatment, emicizumab prophylaxis showed a clinically meaningful reduction in the […]
Today, on World Hemophilia Day, many pharmaceutical companies joined in the celebration by recognizing and supporting the hemophilia community. Linked below are statements from a wide group of companies on today’s celebration of World Hemophilia Day: Grifols Press Release Bioverativ Press Release Novo Nordisk on supporting women with bleeding disorders Shire Press Release CSL Behring […]
Bioverativ joins the global hemophilia community in recognizing World Hemophilia Day and supporting the millions of women and girls impacted by bleeding disorders through this year’s theme, “Hear Their Voices.” Excerpted from the press release: “Bioverativ shares the World Federation of Hemophilia’s commitment to understanding the needs of all members of the bleeding disorders community, including […]
Drug manufacturer, Novo Nordisk recognized World Hemophilia Day 2017 by celebrating the theme of the year; Hear Their Voices, by showing support for women with bleeding disorders. To learn more, read Novo Nordisk’s press release in it’s entirety. here.
Clotting factor manufacturer, Shire, is celebrating World Hemophilia Day in part by hosting an awareness rally in Chicago, Illinois. The rally is aimed mainly to educate the public on the dramatic estimate of a hemophilia bleeding episode occurring worldwide every 3-15 seconds. See more on their website. Read a full statement from Shire recognizing World Hemophilia […]
As part of World Hemophilia Day celebrations, Grifols has announced a large donation of clotting factor to the World Federation of Hemophilia (WFH) Humanitarian Aid Program. This announcement is a continuation of the company’s three-year commitment from 2014, bringing the total humanitarian aid commitment to more than 200M IU of Factor VIII over eight years Read the […]
On April 11, Catalyst Biosciences, a clinical-stage biopharmaceutical company focused on developing novel medicines to address hematology indications, reached a key milestone towards starting human trials with completion of the CB 2679d/ISU304 toxicology studies. Their press release can be read in full here.
Aptevo’s Ixinity, previously approved for use in people over the age of 12, just received approval for use in children under 12, per their ongoing phase 3 trial. Read the full press release here.
Spark Therapeutics issued a press release on updated preliminary data from 10 infused participants in the ongoing Phase 1/2 clinical trial of investigational SPK-9001 for hemophilia B. The data is being presented at Hemostastis & Thrombosis Research Society (HTRS) this week. The press release can be read in full here.
Dear Corey, Max was 2 or 3 years old when I first met you. I had been told about this conference happening in Sturbridge, Massachusetts. I really didn’t even know what it was for, but at that point I was desperate to be connected with anyone who had hemophilia. It was a little shocking […]
By: Christopher Quesenberry Having a rare condition like hemophilia has never held me back from pursuing an active lifestyle. The demands of maintaining a high level of activity, however, ultimately resulted in joint failure. My right knee has been considered a “target joint” since I was in the fifth grade. By the time I reached […]
Stress is defined as a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances. As parents we know stress well. It almost becomes like a good old friend that you have reconnected with. It seems like we can’t escape it but, we can only minimize it. Raising a child […]
Not a big soup fan? Don’t write it off just yet! Many of us are familiar with only canned soup, which can often be less than appetizing. Most store bought canned soups are also high in sodium and devoid of nutrients. Try making homemade soup for a change. It is one of the most healthy […]
Dear Addy, I’ve been following the news about the Affordable Care Act. What else can the bleeding disorders community do to ensure access to quality health care? Signed, Energized Advocate Dear Energized, Advocacy is most successful when people share their personal story about how legislation affects them. Across political parties, Americans are reaching out to […]
When my son Thomas came into the world, he radically changed my knowledge base about hemophilia and other bleeding disorders. As this March comes to an end, I’ve been thinking about how far we’ve come as a family since Thomas’s diagnosis. I decided to look for the original email we sent to friends and […]
My mighty warrior, Caeleb, still has an inhibitor. His Bethesda Unit (BU) is less than one and his half-life is less than four hours, so we have a ways to go. His BU has reached zero a few times, and I was thrilled! It was a victory, and when you live with an inhibitor […]
Congress is currently considering legislation that would undermine patient privacy and workplace non-discrimination protections for individuals and families affected by genetic conditions. This legislation, the Preserving Employee Wellness Programs Act (H.R.1313) was approved by a House committee earlier this month. Under existing law, an employer can run a “voluntary” workplace wellness program – and can […]
Dear Addy, How is the nation’s blood supply managed, and how do we know if it’s safe? Sincerely, Searching for the Best Blood Dear Searching, The US blood supply system is managed by a number of major organizations, including federal agencies. They oversee two types of blood collection activities: (1) the collection of the cellular […]
No importa en la circunstancia en que nos encontremos siempre tenemos una razón por la cual estar agradecidos. A lo largo de mi carrera como maestra de escuela elemental por más de 15 años y ahora como coordinadora de programas en HFA, he tenido la oportunidad de conocer a muchas personas. Maravillosas personas con características […]
I always look forward to reading the weekly Infusing Love Mom Blogs. I enjoy reading about the lives of other caregivers and their perspective on their particular journey or story they take the time to share with readers. I usually have something noteworthy to write about. With three active kids who have chronic illnesses, one […]
Dear Addy, I really want to help my local organization grow its advocacy efforts by starting a committee. However, I’m overwhelmed by the process. Where should I start, and how do I maintain an advocacy committee? Signed, Committee Quandary Dear Quandary, Creating or joining an advocacy committee is a great role if you are interested […]
Whether you are escaping the winter weather for some R&R by the beach, or heading to a relative’s home to catch up, travel disrupts your normal schedule and can make it harder to stay on top of your health and fitness routine. Working out is often easily forgotten on vacation as other activities take priority. […]
Since my son Thomas was born thirteen years ago, I’ve come to think of the bleeding disorders community as family. Relatively speaking, that feeling came to us very quickly after meeting people in the community. My husband and I jumped right into attending events, volunteering, and generally asking questions of medical providers and anyone […]
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Note: The following is an edited version of a press release from Spark Therapeutics. Read the press release from Spark Therapeutics in it’s entirety here. Spark Therapeutics has announced that its Phase 1/2 trial for the investigation of gene therapy for hemophilia A (factor VIII deficiency) has begun. This trial will initially be enrolling participants at the Children’s Hospital […]
Anyone who knows me or has read any of my previous blogs, knows that our household basically revolves around baseball. If the weather is nice and I’m not at work, I’m at the baseball field. Sometimes it makes life a little crazy, but it makes Nick really happy and that is what’s most important. My […]
The following is the full statement from Genentech/Roche regarding the recent death of a 41-year-old hemophilia with inhibitors patient who was participating in the HAVEN 1 study. Dear members of the Haemophilia community, At Roche, we respect and value the close relationships that exist within the haemophilia community. We also understand the important role patient […]
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