by Peter Ciszewski | Mar 25, 2019
Benjamin Forred, Translational Research Project Manager at Sanford Health in Sioux Falls, South Dakota, discusses Rare Disease Day and his organization which is one of the largest health systems in the United States, including research into rare...
by Peter Ciszewski | Mar 23, 2019
Monica Weldon of Bridge The GAP – SYNGAP talks about this rare neurological condition that is linked to autism. Monica Weldon is a rare disease advocate whose son, Beckett, has SYNGAP1. Beckett was one of the first people diagnosed with SYNGAP1. Advocacy...
by Peter Ciszewski | Mar 22, 2019
Kyle Bryant is a rare disease advocate and the founder/director of rideATAXIA for the Friedreich’s Ataxia Research Alliance (FARA). Kyle and his team produce family friendly bike rides across the country to empower those with Friedreich’s Ataxia and...
by Peter Ciszewski | Mar 21, 2019
Becky Abbott, MPH is Manager of Treatment and Research at the National Foundation for Ectodermal Dysplasias (NFED) which provides comprehensive services to individuals affected by ectodermal dysplasias and their families. Ectodermal dysplasias (ED) are a group...
by Peter Ciszewski | Mar 20, 2019
Dean Suhr, President, MLD Foundation and Chairman, Patient Advocacy Advisory Board RARE Project, discusses three rare disease initiatives he heads up: The MLD Foundation, Rare Army, and Keep Smiling. http://mldfoundation.org http://www.rare.army...
