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News & Perspectives

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.  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 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.  We all know pain and its many forms. But do we know how to move past the physical hurt and the emotional guilt?  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 – 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’s 5 o’clock on a weekday. You want to hit the gym, but you’re 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 – 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 músculos y las articulaciones y, al hacerlo, reducir la frecuencia y la gravedad de las hemorragias. Hablamos con Michael Zolotnitsky, Doctor en Terapia Física, […]

FitFactor: 7 maneras de mantenerse activo en invierno

August 31, 2017

Todos sabemos que trabajar en el invierno puede sentirse como una hazaña imposible a veces. Sin embargo, una vez que comience a hacerla parte de su rutina regular, se convertirá en una tarea sencilla y será más fácil de sostener a través de otras épocas del año cuando el clima no es tan duro. Mantener […]


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