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Rare Community

A total of 592 posts are filed under Rare Community
Project Sleep Announces Winners of 2017 Jack & Julie Narcolepsy Scholarship
Project Sleep is proud to announce the 11 recipients of the 2017 Jack & Julie Narcolepsy Scholarship, a national scholarship program… Continue Reading
Rare Disease Patient and Lawyer: “I Want to Walk Again”
By Paula J. Owen (Source) It is a rare, inherited, progressive disease affecting one in 50,000 that results in loss of ambulation six to… Continue Reading
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
Young Patient Collects Can Tabs to Raise Funds for Ronald McDonald House
(SOURCE) A Bristol teen who delivered a trailer full of aluminum can tabs to the Ronald McDonald House in 2014 is now attempting to collect… Continue Reading
Rare Disease South Africa Offers Port Training Opportunity
Rare Diseases South Africa, in partnership with B Braun Medical, has developed a port access training program for patients, caregivers and… Continue Reading
Parent Advocates: What’s Your Rare Secret?
The Mighty recently released a powerful video talking about what rare parents want to say, but often keep secret. The inspiring video… Continue Reading
SCOPE on the Story of Carrie Ostrea: How a Mom Became a Rare Disease Advocate
The team here at Global Genes has had the opportunity to work with Carrie Ostrea for many years. Her service for our organization and in the… Continue Reading