With the current developments of COVID-19, the Snyder-Robinson Foundation has decided to host an online event in lieu of the in-person conference scheduled for June. We are in the process of developing informative content and interactive virtual sessions with our SRF supporters and families. We will be hosting the virtual event the week of June Read more about The 2020 SRF Conference is Now a Virtual Event[…]
Due to the ongoing developments of COVID-19, UPenn’s Orphan Disease Center announced that this year’s Million Dollar Bike Ride is moving from an in-person gathering to a virtual event. Since we will no longer be meeting in Philadelphia on June 13, anyone interested in participating can register as a virtual rider to support Team SRS! Read more about The 2020 Million Dollar Bike Ride Now Virtual[…]
“In December 2017, the Greenwood Genetic Center (GCC) convened and hosted a workshop in Greenwood, SC in association with the Snyder-Robinson Foundation. Participants in the workshop included nationally-recognized basic scientists, physicians who work with patients with SRS, representatives of companies interested in developing therapeutics, and leaders from the SRS Foundation representing the interests of families.” Read more about Greenwood Genetic Center Hosts Rare Disease Workshop[…]
The Snyder-Robinson Foundation offers its deepest condolences to the family of John F. Gallagher. John, of Saint Paul, Minnesota, was born on March 3rd, 1959 and died on October 28th, 2017 at the age of 58. John had SRS, along with family members: brothers, Michael (deceased), Ted and Edward, his cousin, Joseph Buckley (deceased), his Read more about In Memory of John F. Gallagher[…]
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 Read more about Million Dollar Bike Ride Open Announcement[…]
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. Read more about The Snyder-Robinson Foundation Awards Predoctoral Fellowship[…]
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 Read more about The 2015 NORD Rare Diseases and Orphan Products Breakthrough Summit[…]
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!