What is Snyder-Robinson Syndrome? SRS is a rare genetic disorder, characterized by intellectual disability and developmental delays. These delays may affect speech, mobility, and cognition. SRS may present muscle and bone abnormalities, and other challenges with normal development. Many people with SRS are thin and have low muscle mass. SRS causes skeletal problems, particularly osteoporosis. […]
The Penn Medicine Orphan Disease Center (ODC) will host the 3rd Annual Million Dollar Bike Ride on Saturday, May 7th, 2016 to raise money for rare disease research. The Million Dollar Bike Ride brings over 600 cyclists and volunteers to Penn’s campus to ride either 12, 33, or 73 miles starting in the city, and ranging across the Greater Philadelphia […]
The University of Pennsylvania Health System (Penn Medicine) announced the recipients of the 2016 Million Dollar Bike Ride (MDBR) research grants. Two of these grants were awarded for Snyder-Robinson research. Congratulations to Dr. Schwartz and Dr. Fierro! Research Award #1 Charles Schwartz, PhD Greenwood Genetic Center Snyder-Robinson Syndrome pilot for $53,000 Title: Role of Mitochondria […]
The Amazon Smile program is operated by Amazon.com for qualifying non-profit organizations. Amazon donates 0.5% of the price of eligible purchases to the charitable organizations selected by customers. For more information about Amazon Smile, please visit org.amazon.com. The Snyder-Robinson Foundation has been accepted into this program, and is now able to receive donations, based on […]
Dear MDBR Team Captains, The 2016 MDBR Grant Program is now open! We have now posted the Request for Applications (RFA) on the Orphan Disease Center website, here. http://www.med.upenn.edu/orphandisease/rare-disease-overview.html You may use this link to distribute the grant opportunity to those in your network who are interested in applying. Remember, these grants are open […]
FOR IMMEDIATE RELEASE: THE SNYDER-ROBINSON FOUNDATION AWARDS PREDOCTORAL FELLOWSHIP TO CHONG LI, UNIVERSITY OF MIAMI GRADUATE PROGRAM OF HUMAN GENETICS McLean, VA – The Snyder-Robinson Foundation is delighted to announce that it has awarded a Predoctoral Fellowship to Chong Li of the University of Miami Graduate Program of Human Genetics and Genomics. […]
The Snyder-Robinson Foundation was fortunate to receive a scholarship from the National Organization for Rare Disorders (NORD) to attend The Rare Diseases and Orphan Products Breakthrough Summit. The Summit featured over 20 speakers from the FDA, and included participation from over 80 patient organizations and the Pharma/Biotech industry’s foremost experts in orphan product innovation, investment […]
On July 16-17, 2015, the Snyder-Robinson Foundation (SRF) held its inaugural conference in Arlington, VA. This was the first time SRS parents, physicians, researchers, and patients were in the same location. Thanks to all who organized and participated in this great event!
The Snyder-Robinson Foundation (SRF) is a non-profit organization dedicated to innovative research for patients with Snyder Robinson Syndrome (SRS). Welcome to our site!