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HFA Observes February 29 As Rare Disease Day

The Hemophilia Federation of America (HFA) joins the National Organization for Rare Disorders (NORD) on February 29, and others around the world in observing Rare Disease Day. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the U.S., any disease affecting fewer than […]

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Community Voices: An Inhibitor On The High Seas

Justin Levesque (pictured in the orange hat), poses with the crew aboard a ship bound for Iceland.  __________________________________________ Justin Levesque has severe hemophilia with an inhibitor. Justin recently had an opportunity of a lifetime when he spent nine days aboard a ship to Iceland as part of an art project that he developed. In this […]

VeinViewer

HFA Receives Donation of VeinViewer Flex

Christie Medical Holdings Inc., a global leader in portable vein imaging systems to aid in venipuncture procedures, has donated a VeinViewer® Flex to the Hemophilia Federation of America (HFA) as part of the Christie CARES philanthropy program. Based in Washington, D.C., the Hemophilia Federation of America serves as a consumer advocate for safe, affordable and […]

2015 Summer Intern Recap

Earlier this summer we welcomed our summer policy & advocacy interns to our DC office. Adam and Matthew are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Adam and Matthew: Gained […]

Lovee_momsblog

Infusing Love: Camp Forget-Me-Nots

“I don’t have a bleeding disorder,” said my oldest daughter, MaRee, last summer after I told her that I was signing her up for a joint teen retreat/camp hosted by Hemophilia of South Carolina and Hemophilia of North Carolina (HSC/HNC). “I know you don’t have a bleeding disorder, but they are allowing siblings to attend.  […]

HFA Interns Tour Maryland Plasma Center

Earlier this summer, we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Last week, Matthew and Adam had the opportunity to tour Grifol’s plasma collection center in Frederick, MD. Centers like this collected plasma from donors, returning the […]

brendan_college

Infusing Love: Mom Interrupted

I am finding myself in an interesting point in my life.  My oldest son is home for the summer and has finished up his first year of college. My youngest son is about to start his senior year of high school. So I’ve successfully launched one bird out of the nest and hope I can […]

Dear Addy

Dear Addy: Is It Safe To Get A Tattoo With Hemophilia?

  Dear Addy, I want to get a tattoo, but am worried that my hemophilia will complicate things. Is this safe? Signed, Un-Inked ________ Dear Un-Inked, This is a subject that you and your hematologist need to discuss. Here are some questions to ask your hematologist: Safety—Is it safe for someone with hemophilia to get […]

medical_news

CDC Research Study: Female Hemophilia Carriers Have Joint Abnormalities

Research has suggested that women who are carriers for hemophilia (see definition in box below) might have an increased tendency to bleed. Repeat bleeding into the joint can lead to persistent joint swelling, ultimately leading to limited joint movement, and reduced joint range of motion. Given that there is an under-appreciation of the effects of being a […]

Bren and Boys[2]

Infusing Love: Thanks ABC!

Wow – what a difference a day makes!  Yesterday our community was outraged by a careless remark made on the ABC television drama, “Secrets and Lies” which aired on Sunday, March 15th.  I, along with thousands of others, voiced my concern in a variety of ways – social media, emails, and good old fashioned talking. […]

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