Heidi Edwards
President/Founder: Sisters’ Hope Foundation, Rare Disease/Dementia Advocate, FDA Appointed Speaker, ALSP Expert, Jura Health Advisory Board Member, Advisor FDA-TAP program, Consultant, HR Executive
- Role
- President & Founder at Sisters\' Hope Foundation Cure Alsp
- Location
- Hershey, PA, US
- LinkedIn followers
- 500 followers
About Heidi Edwards
I build bridges between patients, researchers, and biotech organizations so that clinical…
Experience
President & Founder
Sisters\' Hope Foundation Cure Alsp
Jun 2020 — Present · Myerstown, PA, US
The mission of Sisters’ Hope Foundation is to support and empower families impacted by HDLS/ALSP by:• educating the public to increase awareness around this rare disease• advocating for further research and funding to improve treatment options• connecting patients and families with this diagnosis to build community and support• providing financial assistance and resources to those in needThrough Sisters’ Hope Foundation, we envision a world where those affected by HDLS/ALSP have support and knowledge, leading to a better quality of life and one day, the first survivor of HDLS/ALSP.Values & Goals:Honesty & TransparencyPatienceAccessibilityCourage
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