by Peter Ciszewski | Jul 10, 2019
Recently, we talked with Scott Dorfman, CEO of Odylia Therapeutics. In this clip, Dorfman explains the origins and philosophy of Odylia Therapeutics, a non-profit company designed to find treatments for rare disease likely to be overlooked by for-profit...
by Peter Ciszewski | Jul 9, 2019
At the BIO International Convention held in Philadelphia, PA, we talked with Akshay Vaishnaw, MD, PhD, Chief Medical Officer at Alnylam Pharmaceuticals about the company’s approved RNA interference (RNAi) drug, Patisiran, to treat to hereditary...
by Peter Ciszewski | Jul 8, 2019
At the BIO Convention recently held in Philadelphia PA, we talked with Dennis Jackman, senior vice-president of public affairs at CSL Behring about some of the barriers to recruiting participants to be in clinical trials for rare diseases. Jackman points out...
by Peter Ciszewski | Jul 5, 2019
Peter Saltonstall, President and Chief Executive Officer of the National Organization for Rare Disorders (NORD), discusses his organization’s position on the Orphan Drug Act. NORD is in the process of setting up a Task Force to look at the Orphan Drug Act...
by Peter Ciszewski | Jul 2, 2019
Durhane Wong-Rieger is the president and CEO of the Canadian Organization of Rare Disorders (CORD). CORD is a non-profit organization that represents over 100 patient organizations in educating Canadian policy makers on the value of Canada developing a Rare...