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Rare Community

A total of 573 posts are filed under Rare Community
The Balancing Act Covers the Orphan Drug Conference USA 2017
The Orphan Drug Conference USA 2017 welcomed thousands of attendees as science, industry, big pharma, and patient advocacy groups met in… Continue Reading
FindaCure Workshop Agenda: A-Z To Setting Up a Patient Group’ Workshop
Findacure and Genetic Alliance UK are pleased to release the schedule for their upcoming workshop on setting up a patient group. The… Continue Reading
Rare Revolution Magazine Features Cystic Fibrosis Patient, Emily Kramer-Golinkoff
Every now and then your meet someone who is an interminable force of nature, someone so passionate and inspirational in all they do they… Continue Reading
Son of Buffalo Bills’ Karlos Williams Battles Hirschprung’s Disease
SOURCE – When it rains, it seems to pour for former Buffalo Bills running back Karlos Williams, Sr. After being jettisoned by Buffalo for… Continue Reading
Rare Disease Inspires Man to Run for Lieutenant Governor
By Patrick Wilson Richmond –  SOURCE Gene Rossi lay in a bed at Johns Hopkins Hospital in Baltimore, dangerously ill, and watched the… Continue Reading
Prince Harry Visits Siblings with CNL2 Batten Disease in London Hospital
Prince Harry has shown remarkable compassion. Prince Harry has shown extraordinary sweetness by visiting two children in hospital. It’s… Continue Reading
Advice From RARE Moms- A Supportive Response to SickKids Foundation’s “Strong Mom” Video
A heart-wrenching video created by the SickKids Foundation took over social media earlier this month. The short commercial showed a series… Continue Reading

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