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People & Organizations

A total of 335 posts are filed under People & Organizations
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
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
Teaching Others to See
Hours after Rachel Callander’s daughter Evie was born, the infant was having difficulty eating and began choking. The medical staff at the… Continue Reading
How Rare Disease Advocates Can Get the Most out of Collaborations
Collaborations play a critical role in advancing potential treatments for a rare disease and can take many forms. In some cases, they may… Continue Reading
Rare Leader: Darlene Shelton, Founder and President, Danny’s Dose Alliance
The Basics Name: Darlene Shelton Title: Founder and President Organization:  Danny’s Dose Alliance Focus:  Emergency medical protocols… Continue Reading
Introducing Voices from the Rare Community
  RARE Daily is starting a new feature called Voices from the Rare Community and we’d like you to be a part of this. From time to time… Continue Reading

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