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What the HHT?

A blog for the HHT community

Celebrate Rare on Rare Disease Day (Feb 29th)

Rare Disease Day® is February 28th! This year, Rare Disease Month is particularly special as it marks the 40th anniversary  of the Orphan Drug Act (ODA), a landmark law that has benefited millions of Americans living with rare disease, including the HHT community!

The law helps incentivize and catalyze rare disease research. With the help of ODA and years of Cure HHT’s own advocacy efforts, we now have three clinical trials underway in HHT!

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An HHT patient conference can change your life

A Letter from Cure HHT Board Member, Jim Lapides

 I am writing to share an invaluable opportunity for all HHT patients – Cure HHT is hosting its national patient conference. I say “invaluable opportunity” because going to my first patient conference in 2012 saved my life.

I was in crisis; laser treatments no longer worked for me, and I could not control my bleeds. My wife and I went to the conference armed with notebooks and learned as much as we could at the sessions. We talked with as many doctors, fellow patients, Cure HHT staff, board members and center directors as we could to learn about potential solutions today and in the future. I went home with a short- and long-term game plan – deciding on the best treatments and the right team to guide me. It led to a new procedure that worked for me and then a second treatment that worked even better. And it led me to finding an HHT Center of Excellence “home base” as well as expert clinicians at other HHT Centers and beyond that have helped me avoid problems and treat new ones.

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Dr. Anthony Anzell Presented with $20,000 Research Grant

The University of Pittsburgh’s Dr. Anthony Anzell Presented with $20,000 Research Grant from Uplifting Athletes Dr. Anzell is among 10 rare disease researchers to be awarded a grant at Uplifting Athletes’ Young Investigator Draft on Feb. 3 at Lincoln Financial Field Pittsburgh (January 9, 2024) — Uplifting Athletes, a nonprofit organization dedicated to serving the…

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Cure HHT Canada now registered as a charitable organization in Canada

We are excited to announce the establishment of Cure HHT Canada as a registered, tax-deductible charitable organization in Canada! We heard your feedback on how important this designation is to you and we’ve worked diligently over the last two years to reach this milestone. The establishment of Cure HHT Canada marks a concentrated effort to expand and increase our support of our community in Canada!

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E-News: Insider Connection

Check out our latest E-News! Delivered monthly, straight to your inbox – stay up to date on all things HHT including research, clinical trials, webinars, awareness, educational opportunities and more! Sign up today!

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