Rare Disease Report

Rare Disease Hawaii

MARCH 13, 2017
Skye Moore
Skye Moore is the Founder and President of Rare Disease Hawaii, a new nonprofit organization that also airs its own television show, educating the citizens of Hawaii about rare diseases.
For more information, visit https://www.facebook.com/pg/Rare-Disease-Hawaii


It's a new nonprofit and we have a one rare disease day event that we work with National Organization of Rare Disease (Nord). It's also a community access TV show that I do to educate, inform and entertain but i also have people on with rare diseases, like a APBD which is a rare form of Huntington. Andit's a person that would never look like they have rare disease and how they deal with people that discriminate against him.

Then I have young girls like Amy's falcone syndrome where she was born without opposable thumbs and has to have constant bone marrow transplants and blood infusions every six months and the support group she goes to only has 60 people that attend so I make that kind of awareness. 

I help get words out for them so they can do their fundraising and get their word out on their disease to gain more attention to what's rare in Hawaii.

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