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People & Organizations

A total of 283 posts are filed under People & Organizations
Rare Leader: Lisa Rose, Executive Director, Hope for SCD
The Basics Name: Lisa Rose Title: Executive Director Organization: Hope for SCD Disease focus: Sickle cell disease, a rare, genetic blood… Continue Reading
Rare Leader: E. Gay Grossman, Founder and Patient Advocate, ADCY5.org
The Basics Name: E. Gay Grossman Title: Founder and Patient Advocate Organization: ADCY5.org Disease focus:  ADCY5-related Dyskinesia is a… Continue Reading
Rare Leader: Catherine Martin, Executive Director of the Huntington’s Disease Youth Organization
The Basics Name: Catherine “Cat” Martin Title: Executive Director Organization:  Huntington’s Disease Youth Organization Disease… Continue Reading
Small Data Matters Too
We first walked through the doors of UNC Children’s Hospital in 2009, scared parents who flew several states away to see an expert on our… Continue Reading
How Maeve Sheehy Learned to Dream
Maeve Sheehy fell asleep as a teenager and woke up as an adult. Sheehy began nodding off in classes at the age of 13 when she started middle… Continue Reading
Economies of Rare
Economies of scale are the efficiencies unlocked by large numbers. I’ve come to realize that the efficiencies of scale can emerge at the… Continue Reading
Invitae Expands Network of Patients in Rare and Ultra-Rare Patient Registries
Rare Daily Staff Invitae said it is expanding its network of rare and ultra-rare patient registries to include five additional… Continue Reading