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People & Organizations

A total of 207 posts are filed under People & Organizations
Rare Disease Report: Learning to See Thanks to a Blind Person
Many rare disease parents gain strength and inspiration by watching their ‘disabled’ child adapt because of – and sometimes thrive in… Continue Reading
The Rare Disease Film Festival Expands Deadline to Submit Films
Disorder: The Rare Disease Film Festival (Disorder: RDFF) is a first of its kind event showcasing a myriad of films from around the world… Continue Reading
RDR: Simon Ibell: Rare Disease Patient and Advocate (1979 – 2017)
Thank you to Rare Disease Report for this tribute post. Simon Ibell passed away peacefully in his sleep on Friday May 25, 2017.  He was 39… 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