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News & Perspectives

FitFactor: 10 Tips to Stay Healthy this Holiday Season

December 7, 2017

The holidays are upon us, and staying healthy during this season can be challenging.  While this is true for the general population, it is especially important for individuals with hemophilia or other bleeding disorders.  We understand the importance that activity and a healthy diet play in maintaining an ideal weight and decreasing the number of bleeding episodes […]

Infusing Love: The Thief of Joy

December 5, 2017

Some of the best sessions I have attended at conferences have been rap sessions. These sessions bring together certain sub-groups in the bleeding disorder community and allow them to have open conversations, asking questions and sharing information with each other. At one rap session, many years ago, a mom in the parents rap session, was […]

Voluntary Recall of Pharmacist Choice Alcohol Prep Pads

December 5, 2017

MedWatch, the FDA safety information and adverse event reporting program released a safety alert on December 5, 2017 outlining a voluntary recall by Simple Diagnostics of three lots of Pharmacist Choice Alcohol Prep Pads due to the lack of sterility assurance and other quality issues. The affected lots are: SD2070421201 (Exp. 12/2019) SD2070420925 (Exp. 09/2019) SD2070420601 (Exp. 12/2019) […]

Dear Addy: New Parent

November 27, 2017

Dear Addy, I’m a new mom and my husband and I just learned that our baby has hemophilia A. We are overjoyed at becoming parents and overwhelmed with next steps. Could you offer tips for building a relationship with a hematologist?  Signed, New Mom  Dear Mom, You’ve come to the right place! Knowing where to […]

Infusing Love: A Season of Gratitude

November 22, 2017

I get some pretty stunned responses when I tell family and friends that I am grateful for hemophilia.  They can’t understand how it is possible that I can be thankful that my son, Thomas, has unexpected, ill-timed, and painful bleeds.  How could anyone find good in dealing with a nonsensical insurance company?  Obviously, I could […]

Genentech Releases Phase III HAVEN 3 Results

November 20, 2017

The following is an edited excerpt from a press release from Genentech. To read the press release in full, click here. Genentech, a member of the Roche Group, announced positive results from the Phase III HAVEN 3 study evaluating Hemlibra (emicizumab-kxwh) in adults and adolescents (aged 12 years or older) with hemophilia A without inhibitors to […]

FDA Approves Genentech’s HEMLIBRA, (Emicizumab-KXWH) for Hemophilia A with Inhibitors

November 16, 2017

Note: The following is an edited excerpt from a press release from Genentech. To read the press release in it’s entirety, click HERE. Genentech, a member of the Roche Group, announced today that the U.S. Food and Drug Administration (FDA) has approved HEMLIBRA® (emicizumab-kxwh) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes […]

Infusing Love: Big Hearts

November 15, 2017

The past six months have been hard. Like hemophilia was managing us instead of us managing hemophilia. I can’t remember the amount of times I sobbed out of frustration, fear and being powerless to help my son. We are still muddling through and each day is a battle. A battle where it seems like we […]

Dear Addy: ABLE Accounts

November 13, 2017

Dear Addy, Are there ways for my teenage son to save money for college, without endangering his health coverage? My son is currently enrolled in Medicaid under our state’s Katie Beckett program for children with long-term disabilities. Signed, Savvy Saver Dear Saver, Here’s one option you and your son may wish to explore: opening an […]

Alnylam Announces Successful Outcome Following FDA Meeting to Discuss Fitusiran Program

November 9, 2017

The following is an edited version of a press release from Alnylam Pharmaceuticals. To read the press in full, click here. Alnylam completed a successful meeting with the U.S. Food and Drug Administration (FDA), reaching alignment on safety measures and a risk mitigation strategy for clinical studies with fitusiran.  These measures include protocol-specified guidelines along […]

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’t put weight on the joints, and therefore reduces the likelihood of bleed due to impact or pressure. It also enables […]

Young Adult Podcast: Grocery Shopping on a Shoestring Budget: How to Choose Healthy Foods without Breaking the Bank

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! Our guests on this podcast are Kathryn Clark, a retired dietician, and Eric Burgeson, an active young adult with hemophilia. Kathryn and Eric iscuss ways to keep costs low at the grocery store […]

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! 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 […]

Infusing Love: Caregiver to Caregiver

November 1, 2017

If you look up National Caregiver’s month on your computer, you will find several items from the Caregivers Action Network (CAN) before anything else. If you look through the stories, tips and suggestions you will see that most of them relate to adult children caring for parents. You can find the 2016 proclamation from President […]

Dear Addy: 2018 Open Enrollment

October 30, 2017

Dear Addy, I’m applying for health insurance for the first time this open enrollment period. With a bleeding disorder, what should I look for in an insurance plan? Signed, First-time Subscriber Dear Subscriber, The Open Enrollment Period is a timeframe each year when health insurance plans or HMOs (health maintenance organizations) are required by law to accept applications […]

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

October 25, 2017

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 […]

Infusing Love: An Unexpected Lesson

October 25, 2017

I lost my job on a Monday. The following Tuesday, I was making the hour-long trek to our HTC for bi-monthly prophy for my 15 month old son, Ben. I had a lot of time to think about what had just happened, what in the world I was going to do, and where to go […]

Young Adult Podcast Series: Getting Tech-y with It: A Hemophiliacs Fitness Journey

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! Our guest on this podcast is James DeFilippi, a triathlete who tells us everything that goes into his training, from his training regimen to the technology he uses to work […]

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

Young Adult Podcast Series: Nutrition

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 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.

Young Adult Podcast Series: Stress & Self-Care

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 as Dr. McClain shares tips on how to manage stress and practice self-care, especially for people living with a bleeding disorder.

Infusing Love: Watching An Advocate Bloom

October 19, 2017

My 11-year-old, Natalie, is not your typical 11-year-old. She is whip smart, savvy, and mature beyond her years. I suppose that comes with being the youngest of three siblings. You have to wise up when your older siblings are trying to pull one over on you since the day you were born. Natalie has recently […]

uniQure Announces Hemophilia B Gene Therapy Program To Enter Pivotal Study

October 19, 2017

Note: The followed is excerpted from a press release from uniQure. Read uniQure’s full press release HERE.  uniQure announced today plans to advance their development program for hemophilia B gene therapy into a pivotal study using an enhanced version of their product candidate called AMT-061. AMT-061 is identical to AMT-060 in every way apart from a change from […]

Bayer Issues Voluntary Recall of Kogenate FS

October 18, 2017

Note: The following is the full text of an email communication received by HFA from Bayer HealthCare Pharmaceuticals: Bayer in consultation with the FDA has voluntarily recalled approximately 300 vials (part of one lot) of Kogenate® FS, Antihemophilic Factor (Recombinant) in the U.S. as an excipient, used to stabilize the product during manufacturing, may not conform […]

Dear Addy: Health Insurance for Young Adults

October 15, 2017

Dear Addy, My son with hemophilia is about to turn 26 and will need to find his own insurance plan. As a parent, how can I help him navigate this process? Signed, Always-an-Advocate  Dear Advocate, This is an important but complicated task. HFA created the following infographic as a tool for walking through the different […]

Infusing Love: Brotherly Bonds

October 11, 2017

It has taken me six years to groom the perfect person to give my youngest son, Laithan, his factor. When Laithan received his port my husband started out being Laithan’s holder and I could never transition him to the other side of the needle. I don’t think I wanted him to do it either, since […]

Infusing Love: In This Moment

October 4, 2017

It’s hard to envision what life is going to look like for my little Maddox when he enters preschool or elementary school in a few years. Right now I focus on the moment and each day as Maddox gets older. He had his first birthday last week and off he went. He took his first […]

FitFactor: Stay Motivated for Fitness

October 3, 2017

For many of us, the biggest challenge to getting physical activity is just putting our minds to it. We all know how easy it is to talk ourselves out of something – and exercise is no exception. There are tons of ways we can keep our bodies healthy and active, so it doesn’t need to […]


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