Receive Our Newsletter

Infusing Love logo_square

Infusing Love: Door 1, Nicholas 0

Do you know those moments when you think, “all is right in our lives today?” 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 logo_square

Infusing Love: Sigue tus sueños…

  Todos los años celebramos el mes de la hispanidad en Estados Unidos (Hispanic Heritage Month en inglés). 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 país. Los […]

Industry News

Bioverativ Enters Joint Project With UK-Based Bicycle Therapeutics

  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

ACTION ALERT: Graham-Cassidy-Heller-Johnson bill

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 […]

introducing_independence_dear_addy

Dear Addy: Teaching Independence

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 logo_square

Infusing Love: Overcoming Pain

  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 logo_square

Infusing Love: The Holidays Are Coming

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 […]

Industry News

Alnylam Suspends Fitusiran Dosing due to Thrombotic Event

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 […]

apple_FF_hero

FitFactor: Pre-Exercise Snacks to Boost your Workout

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 […]

soccer_mom_dear_addy

Dear Addy: Sports

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 […]

Page 7 of 152« FirstPrevious3456789101112NextLast »

Assisting and Advocating for the Bleeding Disorders Community