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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.

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.聽Read uniQure’s full press release HERE.聽 uniQure announced today聽plans to advance their development program for hemophilia B gene therapy into a pivotal study using an enhanced version of their聽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庐 FS, Antihemophilic Factor (Recombinant) in the U.S. as聽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聽 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鈥檚 holder and I could never transition him to the other side of the needle. I don鈥檛 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 鈥 and exercise is no exception. There are tons of ways we can keep our bodies healthy and active, so it doesn鈥檛 need to […]

Infusing Love: we: Door 1, Nicholas 0

September 27, 2017

Do you know those moments when you think, 鈥渁ll is right in our lives today?鈥 We have had a few of those moments recently. We had a horribly tough year in 2016. It just seemed that whichever way we looked, something rough was happening to us or our extended family members. 2017 has been a […]

Infusing Love: Sigue tus sue帽os鈥

September 21, 2017

Todos los a帽os celebramos el mes de la hispanidad en Estados Unidos (Hispanic Heritage Month en ingl茅s). El mes de la hispanidad comienza en 15 de septiembre y termina en 15 de octubre. Este mes es para celebrar las tradiciones, celebramos la cultura y todos los logros de los hispanos de este pa铆s. Los hispanos […]

Bioverativ Enters Joint Project With UK-Based Bicycle Therapeutics

September 19, 2017

  Bioverativ and a UK-based biotech company called Bicycle Therapeutics will work together to try to identify new therapies for hemophilia and also sickle cell disease.聽 The research will focus on using a new approach – called Bicycles – which the companies hope will lead to a new way to treat the blood disorders. Read […]

ACTION ALERT: Graham-Cassidy-Heller-Johnson bill

September 19, 2017

Your access to healthcare is at risk. The Senate is currently considering another bill to repeal the Affordable Care Act (ACA), sponsored by Sens. Cassidy and Graham. Congress only has until September 30th to act on this measure. We must work together to defeat this bill. Why should you take action? The Graham-Cassidy聽legislation would harm […]

Dear Addy: Teaching Independence

September 19, 2017

Dear Addy, I have two preteen kids with bleeding disorders and I want to instill in them independence with respect to their care. Do you have any advice on ways to build this into our routine? Signed, Introducing Independence Dear Independence, This is a great question to be asking now, as transitioning to independence is […]

Infusing Love: Overcoming Pain

September 13, 2017

  When I hear the word “pain” I immediately relate. 聽We all know pain and its many forms. But do we know how to move past the physical hurt and the emotional guilt? 聽The reality of our world is that pain is a part of life – we can dwell in suffering or we can […]

Infusing Love: The Holidays Are Coming

September 8, 2017

The holidays are right around the corner. Ask any mom of a child with hemophilia and we will all attest to the same thing 鈥 with holidays come bleeds! There is no medical explanation for this crazy phenomenon, but sure seems true for many. For us, it always started with Halloween and lasted until the […]

Alnylam Suspends Fitusiran Dosing due to Thrombotic Event

September 7, 2017

The following is an edited version of a press release from Alnylam Pharmaceuticals. To read the press in full, click here. Alnylam recently became aware of a fatal serious adverse event (SAE) that occurred in a patient with hemophilia A who was receiving fitusiran in the Phase 2 OLE study. As a result, the Company […]

FitFactor: Pre-Exercise Snacks to Boost your Workout

September 6, 2017

It鈥檚 5 o鈥檆lock on a weekday. You want to hit the gym, but you鈥檙e hungry and not sure if eating before you exercise will help or hinder your workout. What are the best foods to eat pre-workout? How much of them? How close to your workout time should you eat? Staying fit plays a big […]

Dear Addy: Sports

September 4, 2017

Dear Addy, My son has hemophilia and loves to play sports. He is going into 6th grade this fall and wants to join the soccer team. How do I set realistic expectations with him and his coach? Signed, Soccer Mom Dear Mom, You are not alone in your concerns 鈥 this is a common question […]

FitFactor: Las ventajas de ir al cuarto de pesas

August 31, 2017

  El entrenamiento con pesas juega un papel importante en mantener su cuerpo en forma y saludable. Es una gran manera para las personas con trastornos de sangrado para fortalecer los m煤sculos y las articulaciones y, al hacerlo, reducir la frecuencia y la gravedad de las hemorragias. Hablamos con Michael Zolotnitsky, Doctor en Terapia F铆sica, […]

FitFactor: 7 maneras de mantenerse activo en invierno

August 31, 2017

Todos sabemos que trabajar en el invierno puede sentirse como una haza帽a imposible a veces. Sin embargo, una vez que comience a hacerla parte de su rutina regular, se convertir谩 en una tarea sencilla y ser谩 m谩s f谩cil de sostener a trav茅s de otras 茅pocas del a帽o cuando el clima no es tan duro. Mantener […]

FitFactor: 隆Consejos para tomar su rutina de ejercicios de vacaciones con usted!

August 31, 2017

  Si usted est谩 escapando del clima de invierno para algunos R&R por la playa, o dirigirse a la casa de un familiar para ponerse al d铆a, el viajar interrumpe su horario normal y puede hacer m谩s dif铆cil permanecer en la cima de su rutina de salud y ritmo de ejercicios. Hacer ejercicios es a […]

Infusing Love: Siblings Need History Lessons Too

August 30, 2017

  At HFA, we have a core tenant and motto of our organization. It is 鈥淟est We Forget.鈥 In my family鈥檚 view, raising a child with a bleeding disorder in today鈥檚 world means we have the responsibility of determining when and how we help our children to learn and understand the history of our community. […]

FitFactor: 驴C贸mo se compara su lista de alimentos saludables con la de un nutricionista?

August 29, 2017

  驴Cree usted que sus puntos de vista de lo que es saludable se alinean con las opiniones de los expertos? El New York Times public贸 un interesante art铆culo hace unos meses sobre la percepci贸n p煤blica de lo que es “saludable” y c贸mo estos han cambiado con el tiempo. El estudio tambi茅n destac贸 lo que […]

FitFactor: 隆Brindis para la buena salud … con t茅!

August 29, 2017

Ahora que el invierno est谩 en pleno apogeo y el clima fr铆o est谩 sobre nosotros, puede ser f谩cil olvidarse de mantenerse hidratado. Sin embargo, s贸lo porque no sienta sed, no significa que su cuerpo tiene tanta agua como lo necesita. Una manera f谩cil de hidratarse (y calentarse) es beber t茅. No tiene az煤car a帽adido como […]

FDA Grants Priority Review to Genentech’s Emicizumab for Hemophilia A with Inhibitors

August 24, 2017

Note: The following is an edited version of a press release from Genentech.聽Read the press release from Genentech聽in it鈥檚 entirety here. Genentech, a member of the Roche Group, announced today that the U.S. Food and Drug Administration (FDA) has accepted the company鈥檚 Biologics License Application (BLA) and granted Priority Review for emicizumab prophylaxis (preventative) as […]

Infusing Love: A Back to School Shopping List

August 23, 2017

Buying school supplies prior to the beginning of each school year is a rite of passage. Until my kids got to high school, I was more than happy to take advantage of the school supply kits offered by our school. Even so, each year, I still have to make multiple trips to the store for […]

Octapharma USA Announces FDA Approval of NUWIQ New Product Strengths

August 23, 2017

Note: The following is an edited version of a press release from Octapharma USA.聽Read the press release from Octapharma USA聽in it鈥檚 entirety here. Octapharma USA today announced the U.S. Food and Drug Administration (FDA) has approved new product strengths for NUWIQ. The agency approved new single dose NUWIQ聽vial strengths of 2500, 3000 and 4000 International […]


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