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Rare Community

A total of 540 posts are filed under Rare Community
Honoring John W. Walsh’s Alpha-1 Legacy
John W. Walsh, whose vision of a research foundation and a patient services organization for people with Alpha–1 Antitrypsin Deficiency… Continue Reading
A Rockstar, Big Pharma, And an Advocacy Group Unite!
Missing out on important life events is par for the course in many chronic illnesses. Patients are sometimes forced to bail on family and… Continue Reading
Taylor Swift Shake It Off
RDR: Patient, Police and Fire Fighters ‘Shake It Off’ for Rare Disease
Rare Disease Report Hallie Bea Barnard is a young girl suffering from Diamond Blackfan Anemia (DBA) and is currently looking for a bone… Continue Reading
Pope Francis to Meet with Huntington’s Disease Patients on May 18, 2017
On May 18th, in the first ever papal audience with Huntington Disease families, Pope Francis will meet with the people affected by this… Continue Reading
Seeking OKU Status for Rare Disease Sufferers
Source Did you know that the last day of February is Rare Disease Day?  Well, this year, the Malaysian Rare Disorders Society (MRDS) took… Continue Reading
Illumina Announces the iHope Network, an Expansion of Its iHope Philanthropic Clinical Whole Genome Sequencing Program
Illumina, Inc. (NASDAQ:ILMN) today announced the launch of the iHope Network, a consortium of member institutions who have committed to… Continue Reading
RDLA’s March Legislative Webinar/Conference
RDLA’s March Legislative Webinar & Conference Call Wednesday, March 15th: 1:00 pm to 2:00 pm EST Once a month RDLA convenes in person… Continue Reading