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Rare Community

A total of 608 posts are filed under Rare Community
Upcoming Events on the Rare Calendar
Sunday, November 19, 2017 Comedian and talk-show host Conan O’Brien will host the Congenital Hyperinsulinism International’s annual… Continue Reading
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
Respite Notebook Intended to Help Caregivers Take a Break
Daniel S. Levine Parents of children with a serious, chronic illness often fail to make the time to give themselves a break, spend time with… 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
Department of Education Rescinds Policy Docs on Students with Disabilities
Daniel S. Levine The U.S. Department of Education announced in a newsletter that it had rescinded a total of 72 policy documents relating to… Continue Reading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

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