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Rare Community

A total of 733 posts are filed under Rare Community
Rare Leader: Dawn Ireland, President, CDH International
The Basics Name: Dawn Ireland Title: President Organization: CDH International Disease focus: Congenital diaphragmatic hernia is a birth… Continue Reading
CDC Expresses Concern about Emerging Cases of Rare, Paralyzing Disease
Rare Daily Staff The U.S. Centers for Disease Control and Prevention said since August of 2014, it has seen an increase in the number of… Continue Reading
Sanofi Genzyme and PerkinElmer Expand Access to Free Diagnostic Testing
Rare Daily Staff The Lantern Project, a program Sanofi Genzyme created with PerkinElmer Genomics, is offering no-cost testing for people… Continue Reading
Rare Leader: Marc Yale, Executive Director, IPPF
The Basics Name:  Marc Yale Title:  Executive Director Organization: International Pemphigus & Pemphigoid Foundation Disease focus:… Continue Reading
Amicus Forms R&D Collaboration with Penn Focused on AAV Gene Therapies
Rare Daily Staff Amicus Therapeutics said it entered into a collaboration with the Gene Therapy Program in the Perelman School of… Continue Reading
An Elite Runner Makes a Cross-Canada Trek for His Son and Rare Disease
This summer, elite runner Dave Proctor set out on a 4,500-mile run across Canada to break a Guinness World Record and raise $1 million to… Continue Reading
Rare Leader: Eveline Honig, Executive Director, Narcolepsy Network
The Basics Name: Eveline Honig Title: Executive Director Organization:  Narcolepsy Network Disease focus: Narcolepsy is a chronic… Continue Reading

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