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Rare Community

A total of 627 posts are filed under Rare Community
Rare Leader: Molly White, CEO of the Myotonic Dystrophy Foundation
The Basics Name: Molly White Title: CEO Organization: Myotonic Dystrophy Foundation Disease focus: Myotonic dystrophy is a genetic,… Continue Reading
Rare Leader: Margie Frazier, Executive Director of the Batten Disease Support & Research Association
The Basics Name: Margie Frazier Title: Executive director Organization: Batten Disease Support & Research Association Disease focus: Batten… Continue Reading
Rare Leader: Isabelle Lousada, founder and CEO of the Amyloidosis Research Consortium
The Basics Name: Isabelle Lousada Title: Founder and CEO Organization: Amyloidosis Research Consortium  Disease focus: Systemic… Continue Reading
NORD Awards Five New Grants for Rare Disease Research
Rare Daily Staff The National Organization for Rare Disorders said it made five awards through its 2017 Rare Disease Research Grant Program.… Continue Reading
Why Rare Disease Groups Should Do More to Address Psychosocial Issues
A new study from researchers at Oregon State University finds people with rare conditions are a greater risk for health-related quality of… Continue Reading
Rare Leader: Andra Stratton, President and Co-Founder of Lipodystrophy United
The Basics Name: Andra Stratton Title: President and co-founder Organization: Lipodystrophy United Disease focus: Lipodystrophy is a… Continue Reading
Funding a But-For-Us Project
Dan Brendtro calls it a “but-for-us” project. Brendtro, an attorney in Sioux Falls, South Dakota is in the midst of a crowdfunding… Continue Reading