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Noah and Evann

A Caregiver’s Perspective: The Unaffected Sibling

My brother Evan was born on July 3rd, 2007. Two days after he was born, he was diagnosed with severe hemophilia A. I was eight years old when he was born and had never heard of this condition. It was difficult for me to grasp that my little brother would not live a ‘normal’ life. […]

National Caregiver Month

November is National Caregiver Month

The bleeding disorders community is made up of dedicated caregivers. Moms, dads, grandparents, partners, spouses, and friends play a crucial supportive role in their loved one’s well-being. However, caregivers can often feel stressed, overwhelmed and burnt out. Therefore, it is important for caregivers to remember to take time just for them. Caregivers often feel guilty […]

Vaughn_Mens Health

Mens Health Magazine: Vaughn Ripley

[glossary_exclude]Earlier this year we encouraged the bleeding disorders community to vote for Vaughn Ripley, fitness guru living with hemophilia and HIV, during a Men’s Health cover contest. Due to your support, Vaughn received nearly 30,000 votes, earning him the below article in the November edition of the magazine! This article helps to bring awareness and education about […]

medical_news

FDA Approves First Combination Pill to Treat Hepatitis C

The U.S. Food and Drug Administration today approved Harvoni (ledipasvir and sofosbuvir) to treat chronic hepatitis C virus (HCV) genotype 1 infection. Harvoni is the first combination pill approved to treat chronic HCV genotype 1 infection. It is also the first approved regimen that does not require administration with interferon or ribavirin, two FDA-approved drugs […]

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Bullying: A Serious Problem for Kids with a Chronic Condition

Children with special health needs such as a bleeding disorder can be at an increased risk of being bullied because of issues like physical vulnerability, social skill challenges, and intolerant environments. Kids with hemophilia may become a target when they use crutches, are limited to certain activities during recess/gym classes, have a visible PICC line/port, or […]

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Brighter Outlook for Community Members Affected by HCV

Hepatitis C (HCV), often referred to as the “silent killer”, has been a serious crisis for the bleeding disorders community, who contracted the disease from contaminated blood products prior to the early 1990s. Treatments exist, but with many difficult side effects and mediocre efficacy. However, advocacy in the bleeding disorders community has contributed to the […]

Beard for Bleeders

Community in Action: Beards for Bleeders

John Bruno is truly a Dad in Action. HFA recently asked John a few questions about his involvement in the community. John sets a great example for all of those affected by a bleeding disorder. “I’m just looking for a way to do my part in supporting this great community.” Join John in his efforts […]

Lewis and Maria_Wrapup

HFA Policy & Advocacy Intern Synopsis

Earlier this summer we welcomed our summer policy & advocacy interns to our DC office. Lewis and Maria are part of the bleeding disorders community and were chosen to participate in a 8 week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Lewis and Maria […]

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FDA Hosts Patient-Focused Meeting

  On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA.* HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out […]

HFA’s Excutive Director to FDA: Treatment is Not One Size Fits All

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out to share […]

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Assisting and Advocating for the Bleeding Disorders Community