What the HHT?

A Voice for the HHT Community

‘One person can make a difference and everyone should try.’ – JFK

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By Savanah Schott

Roy and SavanahRare Disease Week on Capitol Hill brought more than 300 rare disease patients, researchers, physicians and caregivers together to lobby for legislation to benefit the rare disease community.

Roy Forey (HHT patient and Cure HHT Foundation Board Member) and I took our stand with this amazing group of people to lobby elected officials for support of the HHT Diagnosis and Treatment Act, including Congressmen Loebsack and Young as well as Senators Grassley and Ernst.

Congressman Loebsack has already shown his support by co-sponsoring the bill, and we’re hopeful Congressman Young will consider co-sponsoring the bill. Senators Grassley and Ernst wanted to learn more about HHT, and said they will consider supporting the legislation once it has been introduced.

Roy Savanah Loebsack

Roy, Savanah and Rep. Loebsack

Rare Disease Week was such an empowering experience – we heard countless stories of people overcoming adversity and advocating for themselves, their family and their rare disease. What stuck with me the most is the idea that none of us are  alone. There are 9,000 known diseases and just over 7,000 of them are considered “rare.” We’re all in this together.

As President John F. Kennedy said, “One person can make a difference and everyone should try.” You can make a difference – write or call your elected officials to support the HHT DATA Act (H.R. 1849) and ask your Senators to consider introducing a sister bill in the Senate.

While we had an amazing experience reaching out for HHT, we also learned about the following bills that would positively impact the HHT community:

Grassley Savanah and Young

Senator Grassley, Savanah and Rep. Young

The OPEN ACT (S.1421/H.R. 971) – The Orphan Products Extension Now, Accelerating Cures & Treatments is legislation with the potential to double the number of treatments available to rare disease patients. This bill would create a six month exclusivity extension for companies that repurpose existing therapies for a rare disease indication.

Rare Disease Fund Act (H.R. 3721) – The Rare Disease Fund Act would establish a private investment fund at the National Institutes of Health to help fund rare disease clinical trials.

The Patient Focused Impact Assessment Act (S. 1597) – This legislation will enable the Food and Drug Administration to use specific tools to elicit patient input when making drug approval decisions.


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