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Rare Community

A total of 751 posts are filed under Rare Community
Rare Leader: Sharon Rose Nissley, Founder and Executive Director, Klippel-Feil Syndrome Freedom 
The Basics Name: Sharon Rose Nissley Title: Founder and executive director Organization: Klippel-Feil Syndrome Freedom  Disease focus:… Continue Reading
Matching Volunteers to Rare Disease Organizations in Need
Many rare disease organizations are resource constrained and depend on the kindness of volunteers to provide specialized services and… Continue Reading
Rare Leader: Vanessa Vogel-Farley Executive Director Dup15q Alliance
The Basics Name:  Vanessa Vogel-Farley Title:  Executive director Organization: Dup15q Alliance Disease focus:  The disease focus is… Continue Reading
McGill University Medical Student Named Recipient of Cox Scholarship for Rare Compassion
Rare Daily Staff Global Genes named medical student Kristin Hunt as the 2018 David R. Cox Scholarship recipient Launched in 2015, the David… Continue Reading
How One Rare Disease Organization Used Technology to Provide Greater Patient Insight to FDA
When the Hereditary Neuropathy Foundation set up a patient focused drug development meeting with the FDA, it knew that patients with… Continue Reading
Rare Leader: Sue Kahn, Executive Director, National Tay-Sachs & Allied Diseases Association
The Basics Name: Sue Kahn Title: Executive director Organization: NTSAD – National Tay-Sachs & Allied Diseases Association Disease focus:… Continue Reading
The Potentially Deadly Consequences of an Oversight in Newborn Screening Tests
When Jon Miller’s son was born doctors failed to diagnose a rare and deadly medical condition despite using newborn screening that was… Continue Reading

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