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News & Perspectives

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 […]


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