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Genentech Announces the Launch of New Safety Website

September 3, 2018

Genentech has 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. Visit the safety website:聽http://www.emipatientinfo.com/. Earlier this year, Genentech launched a similar site specifically for health care providers. In announcing the launch, Genentech stated 鈥淭his website is meant to […]

uniQure Announces First Patient Treated in Dose-Confirmation Study in Patients with Hemophilia B

August 24, 2018

The following is an excerpt from a press release from uniQure. Read the press release in its entirety here.聽 uniQure, a leading gene therapy company advancing transformative therapies for patients with severe unmet medical needs, announced it has treated the first patient in its Phase IIb dose-confirmation study of AMT-061, an investigational AAV5-based gene therapy […]

Spark Therapeutics investigational trail moves into Phase 3

August 7, 2018

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: Mental Health

August 6, 2018

Dear Addy, I鈥檝e heard friends in the bleeding disorders community speak about depression and other mental health concerns. I want to support them, but I鈥檓 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: Supporting Siblings

July 23, 2018

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 […]

Word From Washington: Latest Affordable Care Act Developments

July 12, 2018

The past week has seen a flurry of news on the ACA front. We鈥檝e summarized some of the latest developments for you here. On July 10, the US Centers for Medicare and Medicaid announced it will further聽reduce funding for navigators.聽Navigators are individuals or organizations that are trained to help Americans buy insurance in the ACA […]

Intern Introspective: Meet Alexandra and Catherine

June 8, 2018

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 […]

Dear Addy: New Treatment Research

May 15, 2018

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: Building Relationships

April 2, 2018

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 […]

Infusing Love: Plenty to Keep Her Busy

March 28, 2018

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 […]

Genentech Medical Communications Line Available to Answer Questions About Hemlibra聽

March 27, 2018

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: Op-ed

March 22, 2018

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 […]

Infusing Love: Life’s Little Surprises

March 14, 2018

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 […]

Infusing Love: Talk With Your Children

February 28, 2018

Disclaimer: At HFA, we value all opinions. This blog only reflects 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 a.m. on April 20, 1999, in Littleton, Colorado, […]

Infusing Love: Am I a Carrier?

February 14, 2018

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 […]

Breakthrough in Hemophilia Gene Therapy

January 31, 2018

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鈥檚 ability to stop bleeding and repair damaged blood vessels depends heavily upon […]

Octapharma Support Enables Bombardier to Climb Mount Vinson, Becoming First Hemophiliac to Ascend the Seven Summits

January 24, 2018

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 […]

Infusing Love: Relating to 鈥榃onder鈥

January 24, 2018

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 […]

Hemophilia Puts Damper on Patients鈥 Sex Life and Health Status, Study Reports

January 23, 2018

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 […]

Sanofi to Acquire Bioverativ for $11.6 Billion

January 22, 2018

Note:聽The following is edited from a press release from Sanofi. Read the full press release in its entirety聽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 […]

Infusing Love: Ayudando Nuestras Familias

January 16, 2018

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 caribe帽os. Arropada por el Mar Caribe y el Oc茅ano Atl谩ntico. En donde se habla espa帽ol y es un territorio ligado a Estados Unidos como Estado Libre Asociado y […]

Fit Factor: Inspiring Fitness Stories to Get You Going in 2018

January 9, 2018

Below, we鈥檒l 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.聽 All of them have discovered a form of physical activity that is enjoyable and adaptable to […]

Alnylam and Sanofi Enter into Strategic Restructuring of RNAi Therapeutics Rare Disease Alliance

January 9, 2018

Note:聽The following is edited from a press release from Alnylam. Read the full press release in its entirety聽here. Alnylam Pharmaceuticals, Inc.,聽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 […]

Catalyst Biosciences Initiates Phase 2 of Potential Hemophilia A and B Therapy

January 5, 2018

Note:聽The following is聽an excerpt聽from an article by Rare Disease Report. Read the full聽article in its entirety聽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 […]

Infusing Love: Opening Our Hearts & Home

November 9, 2017

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 […]

FitFactor Video: Swimming: A Safe and Efficient Workout

November 6, 2017

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鈥檛 put weight on the joints, and therefore reduces the likelihood of bleed due to impact or pressure. It also enables […]

Young Adult Podcast: Maintaining Motivation: Creating Habits for a Lifetime of Fitness

November 3, 2017

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!聽Our guest on this聽podcast is聽Karen Sullivan, retired professor of Health/Fitness at Marymount University. Tune into hear Karen discuss聽how to build sustainable fitness habits and how to get back on […]

Bleeding Disorders Organizations Introduces Joint Statement Supporting Bi-partisan Alexander-Murray Legislation

October 25, 2017

Click here聽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 […]

Young Adult Podcast Series: Weight Lifting

October 19, 2017

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聽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 […]

Young Adult Podcast Series: Yoga

October 19, 2017

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!聽Tune in to in to hear about yoga, weight training, to help you live better with a bleeding disorder.


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