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7 Ways to Stay Active in Winter

February 6, 2017

We all know that working out in the winter can feel like an impossible feat at times. However, once you start making it part of your regular routine, it’ll turn into a simple task and become easier to sustain through other parts of year when the weather isn’t so harsh. Keeping your body healthy and […]

Dear Addy: Out-of-Pocket Expenses

February 6, 2017

  Dear Addy, I just got my daughter’s January EOB, and I realized that my family is now responsible for up to $14,300 in out-of-pocket (OOP) expenses. Why did this amount go up $600, even though we kept our same insurance? And how can I afford this?!? HELP! Signed, Anxious about OOPs Dear Anxious, High […]

Infusing Love: Bleeds Hurt

February 1, 2017

  A couple of months ago, my 8th grade son with hemophilia had “Future Bruin” night at the high school he will be attending next year. Any time we have to think about making a school move with him it induces anxiety for me as I start thinking about the process we’ll have to go […]

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business

February 1, 2017

Note: The following is an edited version of a press release from Bioverativ. Read the press release from Bioverativ in it’s entirety here. Today, February 1, 2017, Bioverativ launched as an independent, global biotechnology company focused on the discovery, development, and commercialization of innovative therapies for hemophilia and other rare blood disorders. Bioverativ is formed by a spin-off of Biogen’s […]

UniQure Receives FDA Breakthrough Designation of AMT-060 Investigational Gene Therapy

January 30, 2017

______________________________________________________________________________ Note: The following is edited from a press release from UniQure. Read the full press release in it’s entirety here. UniQure announced that AMT-060,  its proprietary, investigational gene therapy in patients with severe hemophilia B, has received Breakthrough Therapy designation by the U.S. Food and Drug Administration (FDA).  This designation is based on results from the […]

Millennials Get Busy- Advocacy for Young Adults

January 26, 2017

By Sarah Shinkman Learning how to advocate is an important life skill at any age. Whether you are practicing personal, peer, or group advocacy, you have the power to influence decisions that may affect you and others. HFA’s final Young Adult Hangout of 2016 featured two community advocates and a health insurance overview by Erin […]

Infusing Love: I’ll Be Ready

January 25, 2017

Every day, I am reminded of how quickly time passes. My kids will only be little for a very short period of time. As working parents, we always tend to wish the days away in order to get to the weekends when we can take a deep breath, relax, and prep for another busy week […]

Okay, So What Can We Do?

January 24, 2017

By Lori Long and Sarah Shinkman “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead To find an example of the type of group Margaret Mead speaks about in her famous quote, look no further than our bleeding disorders community. […]

CDC Describes New Method to Detect Specific Antibodies in Inhibitor Development

January 24, 2017

Note: The following is an abridged form of an article from the Centers for Disease Control and Prevention(CDC). The original full-length of the article can be read here. The Centers for Disease Control and Prevention (CDC), along with researchers from the Hemophilia Inhibitor Research Study (HIRS), have recently published two articles in The Journal of Thrombosis and Haemostasis. The articles describe […]

Dear Addy: Self-care

January 23, 2017

Dear Addy, With the holidays behind us, I’m trying to focus on taking care of myself in the new year. However, I struggle to do this between family, work, and social obligations. Can you provide some tips on self-care so I can be a better advocate for myself and my family? Signed, Stressed Out Dear […]

Infusing Love: Now What?

January 18, 2017

  This week the Infusing Love Mom’s Blog will tackle a touchy subject: What happens to health care in 2017? Is there a replacement for the ACA that will offer support and protections? Whether your politics lay left, right, or center, as a community, we all live with having bleeding disorders in our lives and […]

Infusing Love: Single But Not Alone

January 11, 2017

Being a single parent is challenging for anyone. Being the single parent of a child with a severe, costly chronic illness comes with its own set of issues. I remember the times that Max unable to attend events that were geared toward fathers and sons. I once called our chapter office when Max was around […]

HEMA Biologics Receives FDA License for New Recombinant Factor VIIa Product

January 10, 2017

Note: The following is edited from a press release from PRNewswire.com. Read the full press release in it’s entirety here. HEMA Biologics, LLC announced that the FDA has accepted the Biologics License Application(BLA) for their first potential product for commercialization in the United States.  The acceptance of the BLA for Coagulation Factor VIIa, Recombinant (eptacog beta […]

Community Member Spotlight: Shawn Nease, Organizer of Delves for Donors

January 9, 2017

  For the second year in a row, Shawn Nease organized a charity game of Dungeons & Dragons, a fantasy tabletop role-playing game, to raise money for HFA’s Helping Hands Program. Delves for Donors II: Out for More Blood offered gamers in Maryland and Eastern Pennsylvania the opportunity to purchase a seat in a two-hour […]

Dear Addy: Workplace Disclosure

January 9, 2017

Dear Addy, I just accepted my dream job, and I can’t wait to get started. Unlike my last job, however, no one knows I have a bleeding disorder. When should I approach my new employer with this, and how much should I share? Sincerely, New Job Jitters Dear New Job, You only need to disclose […]

How I Cope With Pain

January 5, 2017

Note: This article is for educational purposes only and is not intended to be construed as direct medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers. Pain is a serious medical concern in our country. Approximately […]

What is Helping Hands?

January 5, 2017

By Elaine Chan, MSW, MPH At any point, families living with a bleeding disorder can experience financial hardship because of their medical situation. HFA’s Helping Hands Program has become a safety net for thousands of families throughout the years. Helping Hands has provided many families with assistance for expenses like housing, utilities, and transportation. In […]

Infusing Love: Smells and Sounds

January 4, 2017

The senses of sound and smell are very powerful. Sometimes a smell can spark a memory of a wonderful meal simmering on a stove or the smell of the air from a perfect breeze on a spring day can transport us back. The sounds of elevators dinging as people anxiously wait their turn and the sliding […]

FitFactor: Toast for Good Health…with Tea!

January 1, 2017

Now that winter is in full swing and the cold weather is upon us, it can be easy to forget to stay hydrated. However, just because you don’t feel thirsty, doesn’t meant your body has as much water as it needs. An easy way to hydrate (and to warm up) is by drinking tea. It […]

Shire’s Adynovate Receives Two New FDA Approvals for Treatment of Hemophilia A

December 29, 2016

Note: The following is edited from a press release from Shire. Read the full press release in it’s entirety here. Shire plc recently announced that the U.S. Food and Drug Administration (FDA) has approved Adynovate, an extended circulating half-life recombinant Factor VIII treatment for hemophilia A, in pediatric patients under 12 years of age. The FDA […]

Infusing Love: Naughty or Nice – It’s a Choice

December 28, 2016

One of my co-workers often uses the phrase unconscious incompetence. It essentially means you just don’t know what you don’t know. The recent election surprised many. I’ll stay away from the politics but I can’t help but reflect on the flippant comments made by a constitutional law professor post-election who referred to those who were […]

Dear Addy: New Years Resolution

December 26, 2016

Dear Addy, My new year’s resolution is to be a stronger advocate for the bleeding disorders community. How do I reach people and where can I find information to share? Signed, Want to Be the Change Dear Change, You came to the right place! HFA has several resources available for people to increase their awareness […]

Genentech Meets Primary Endpoint for Phase III Emicizumab Study

December 22, 2016

______________________________________________________________________________ Note: The following is edited from a press release from Genentech. Read the full press release in it’s entirety here. Genentech, a member of the Roche Group, announced that the primary endpoint has been met for the Phase III HAVEN 1 study evaluating emicizumab prophylaxis in people 12 years of age or older with hemophilia […]

Octapharma Presents Phase III NuProtect Data at 2016 ASH Annual Meeting

December 22, 2016

______________________________________________________________________________ Note: The following is edited from a press release from Octapharma. Read the full press release in it’s entirety here. At the recent American Society of Hematology (ASH) Annual Meeting, Octapharma presented interim data from the ongoing phase 3 study, NuProtect. The NuProtect Study examines the immunogenicity, efficacy and safety of treatment with human cell-line derived recombinant […]

Infusing Love: Nuestra Responsabilidad Como Padres

December 21, 2016

Sin darnos cuenta muchas veces queremos “ayudarles” y hacemos las cosas por ellos. Ahh que mucha paciencia tenemos que tener.   Debemos ser conscientes de que en el futuro ellos necesitan hacer las cosas por si solos. Debemos comenzar a temprana edad, a darles responsabilidades de acuerdo a sus capacidades y edades. Pero, la etapa de […]

HFA Awards 2016 Educational Scholarships

December 16, 2016

Each year, HFA awards scholarships to promising students in the bleeding disorders community. A total of four scholarships ranging from $2,000 to $4,000 is awarded in these three categories: Educational Scholarship Two educational scholarships were awarded in the amount of $2,000 each to students with a bleeding disorder who were seeking a post-secondary education from […]

Infusing Love: Growing Up So Fast

December 14, 2016

  This week’s Infusing Love entry is a poem co-written by our longtime blogger, Kari, and her daughter, Scarlett. I’m learning to be safer, watch my step, and stay out of harms way. Each day a new lesson, on how to exercise and how to play! I might start off feeling intimidated, scared or shy. […]

UniQure Announces New Data in Phase I/II Clinical Trial

December 12, 2016

______________________________________________________________________________ Note: The following is edited from a press release from UniQure. Read the full press release in it’s entirety here. UniQure announced new and updated results during the American Society of Hematology (ASH) meeting in relation to its ongoing, dose-ranging Phase I/II trial of AMT-060. AMT-060 is UniQure’s proprietary, investigational gene therapy for patients with severe […]

Sangamo Biosciences Announces Plans to File for New Investigational Drug

December 12, 2016

______________________________________________________________________________ Note: The following is edited from a press release from Sangamo Biosciences. Read the full press release in its entirety here. Sangamo Biosciences presented data during the recent American Society of Hematology (ASH) Annual Meeting regarding preclinical and manufacturing data of SB-525, its gene therapy program for hemophilia A. “We have developed an improved […]

Spark Therapeutics Shares Updated Phase I/II Clinical Trial Data

December 12, 2016

______________________________________________________________________________ Note: The following is edited from a press release from Spark Therapeutics. Read the full press release in it’s entirety here.. Spark Therapeutics and Pfizer announced updated results from the Phase 1/2 study of SPK-9001, an investigational recombinant gene transfer product in hemophilia B, at the 58th American Society of Hematology (ASH) Annual Meeting, […]


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