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People & Organizations

A total of 294 posts are filed under People & Organizations
Rare Leader: Allison Fine, Founder and Executive Director of the Center for Chronic Illness
The Basics Name: Allison Fine Title: Founder and Executive Director Organization:  Center for Chronic Illness Disease focus:  Providing… Continue Reading
Rare Leader: Neena Nizar, Founder and Executive Director of The Jansen’s Foundation
The Basics Name: Neena Nizar Title: Founder and Executive Director Organization:  The Jansen’s Foundation Disease focus:  Jansen’s… Continue Reading
Failed Drug May Have New Life as Treatment for Rare Motor Neuron Disease
Rare Daily Staff A team of international researchers have identified a failed drug first discovered in the 1980s as a potential new… Continue Reading
Rare Leader: Katie Stevens, President of Dyskeratosis Congenita Outreach
The Basics Name: Katie Stevens Title: President Organization:  Dyskeratosis Congenita Outreach Disease focus:  Dyskeratosis congenita (and… Continue Reading
Rare Leader: Kelly Ranallo, Founder and President, Turner Syndrome Global Alliance
The Basics Name: Kelly Ranallo Title: Founder and President Organization:  Turner Syndrome Global Alliance Disease focus:  Turner syndrome… Continue Reading
Rare Leader: Monika Jones, CEO, The Brain Recovery Project: Childhood Epilepsy Surgery Foundation
The Basics Name: Monika Jones Title: Co-Founder and CEO Organization: The Brain Recovery Project: Childhood Epilepsy Surgery Foundation… Continue Reading
Rare Leader: Elisa Seeger, Founder of the Aidan Jack Seeger Foundation
The Basics Name: Elisa Seeger Title: Founder Organization:  Aidan Jack Seeger Foundation Disease focus:  Adrenoleukodystrophy, or ALD, is… Continue Reading

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