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Rare Community

A total of 699 posts are filed under Rare Community
Curating Patient Data to Accelerate Rare Disease Drug Development
When Onno Faber began experiencing hearing loss in his left ear four years ago, doctors suspected an infection and prescribed steroids. His… Continue Reading
Rare Leader: Taylor Gurganus, Chair and Co-Founder, Bohring-Opitz Syndrome Foundation
The Basics Name: Taylor Gurganus Title: Chair and co-founder Organization: Bohring-Opitz Syndrome Foundation Disease focus: Bohring-Opitz… Continue Reading
Forging a Research Agenda for a Rare Disease
When Katheryn Elibri Frame’s daughter was diagnosed with CDKL5 disorder, a rare neurological condition that causes treatment-resistant… Continue Reading
Rare Leader: Lisa Flint, Founder and Managing Director of The AADC Research Trust
The Basics Name: Lisa Flint Title: Founder and Managing Director Organization:  The AADC Research Trust Disease focus:  Aromatic amino… Continue Reading
Rare Leader: Lisa Schoyer, Founder and President of RASopathies Network
The Basics Name: Lisa Schoyer Title: Founder and President Organization:  RASopathies Network Disease focus: The RASopathies are a group of… Continue Reading
How Destiny Lamonte Learned to Advocate for Herself and Others
At the age of 4, Destiny Lamonte was diagnosed with vascular Ehlers-Danlos syndrome, a rare connective tissue disorder and considered the… Continue Reading
Rare Leader: Angela Patricia Chaves, President, Federación Colombiana de Enfermedades Raras
The Basics Name: Angela Patricia Chaves Title: President Organization:  Federación Colombiana de Enfermedades Raras (Columbia Rare… Continue Reading
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