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Intern Introspective: Introducing La’Brittinee and Paul

Earlier this year, we opened applications for a ten-week policy & government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! La’Brittinee & Paul are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]

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Infusing Love: Meet Lindsay

Nine years ago, I was blessed with my oldest son Zachary. With each passing day, he grows into an exceptional young man with love and compassion for everyone he meets. His smile and dimples are infectious and can melt any mother’s heart. Zachary had been the only child for four years when my husband and […]

Dear Addy: Virtual Hill Day

Dear Addy, I saw a lot of activity on social media last week about HFA’s Virtual Hill Day and Patient Fly-in. Can I still participate? Signed, Always an Advocate Dear Advocate, YES! On May 24th, HFA organized a Virtual Hill Day, in conjunction with meetings on Capitol Hill, to encourage community members nationwide to contact […]

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Infusing Love: Meet Heather, a Brand New Hemo Mom

  My life was flipped upside down nearly 3 weeks ago when I became a hemophilia mom. To say that I was shocked is a true understatement. What I thought were little bruises because I had shoved my son Maddox into his bumbo seat, turned out to be a disorder that would affect my baby […]

HFA Honors Congressional Representatives as Champions for Chronic Illness

On May 24, 2017, we hosted our 4th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. As they consider HR 1628, the American Health Care Act (AHCA), the Senate has indicated that they intend to start from scratch on health reform and they need to hear from their constituents when crafting their plan. […]

Bleeding Disorders Advocates Host Patient Fly-In

  Washington, DC– Tomorrow, Hemophilia Federation of America (HFA) is hosting a Patient Fly-In and Virtual Hill Day for the bleeding disorders community. As questions surrounding health reform move to the Senate, patients will meet with their Senators, ensuring that their needs are represented. Patients will also participate in a Virtual Hill Day by calling, […]

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Infusing Love: Hit the Road, Jack

  Every hemo mom has the day she must send her child off on an overnight school trip, trusting that she has done everything she can to prepare her child for the responsibility of being on their own. My time came a few weeks ago when my son went to Orlando with his Sing Out […]

Dear Addy: Life Insurance

Dear Addy, I’m applying for life insurance, but I’m either ineligible or being told I have to pay three times the normal rate because I have hemophilia. Is this typical with a rare disorder, and is there anything I can do about it? Signed, Planning Ahead Dear Planning, Unfortunately, as you’ve found, your health status […]

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Infusing Love: A or B (Arthritis or Bleed?)

Back in the “old days” before prophylaxis (prophy), hemophiliacs were treated on demand when they had a bleed. Max is just old enough to fall into that category so he didn’t switch to prophy until he was five years old. By then he had already had enough bleeds in his left ankle that the damage […]

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Infusing Love: Life Imitates Art

When ABC premiered, “Speechless” last fall, I wasn’t sure if it would meet my expectations. Would it show special needs parenting and family life in a realistic, often sarcastic way, or would it have the feel of an afterschool special? I’m happy to say it’s readily become one of a handful of shows we watch […]

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Assisting and Advocating for the Bleeding Disorders Community