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People & Organizations

A total of 219 posts are filed under People & Organizations
Rare Leader: Sharon King
The Basics Name: Sharon King Title: President Organization: Taylor’s Tale Disease focus: CLN1 disease, a form of infantile Batten disease… Continue Reading
The Process of Being Alive
Claire Wineland laughs in the face of death. In fact, she’s made a bit of a career doing this on her own YouTube channel and through… Continue Reading
Shared Goals, Rather than a Transactional Approach, Can Keep Relationships with Industry Ethical
Katie Jensen Rare disease patient advocacy organizations face ethical issues regarding their relationships with the pharmaceutical industry.… Continue Reading
Learning the Meaning of Being Patient-Centric
Andra Stratton has never met a pharmaceutical company that wasn’t patient-centric, or at least one that didn’t declare itself to be so.… Continue Reading
New CDRH Patient Engagement Advisory Committee Meets
Rare Daily Staff The Food and Drug Administration said it hosted the first meeting of the Patient Engagement Advisory Committee or PEAC,… Continue Reading
Grace Science Foundation and Stanford University Create Biobank for Ultra-Rare NGLY1 Deficiency
Rare Daily Staff The Grace Science Foundation and a clinical research team from Stanford University have created an open source biobank of… Continue Reading
Understanding What Rare Disease Caregivers Face
Caregivers of patients with rare diseases are providers, protectors, and advocates. They have forced themselves to learn the language of… Continue Reading
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