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What the HHT?

A blog for the HHT community

A Tale of Two Sisters (Part 2)

Lily&Hope

My name is Hope and I’m 8 ½ years old. My sister has had nosebleeds ever since I can remember. Sometimes she has a nosebleed in the middle of playing. Blood can drip on our Legos and we have to stop. I feel really sad when Lily’s having her nosebleeds because I really like playing…

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A Tale of Two Sisters (Part 1)

Lily&Hope

I have had nosebleeds ever since I was 5 years old. These nosebleeds aren’t your normal nosebleeds – I get them every day, sometimes more than once a day. On January 31, 2020, I was diagnosed with a very rare genetic condition called Hereditary Hemorrhagic Telangiectasia (HHT for short). I had lots of tests to…

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ACT NOW! HHT Federal Funding in Jeopardy!

Over the past few years, our HHT researchers have received significant funding for “Vascular Malformations,” a serious manifestation of HHT, through the Department of Defense’s (DoD) Peer Reviewed Medical Research Program (PRMRP). We recently learned that VM’s were inadvertently left OUT of the PRMRP for 2021. Your help is urgently needed in getting VM’s back…

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