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 of more than 180 disorders that affect the outer layer of tissue of the …
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.
Lynn O’Connor Vos, President and Chief Executive Officer at the Muscular Dystrophy Association, discusses her organization and it’s approach to funding research to accelerate treatments and cures across the full spectrum of neuromuscular diseases.
Dean Suhr, President of the MLD Foundation, provides an overview of Metachromatic leukodystrophy (MLD) and an overview of his advoacy organization.
Jennifer McNary is a consultant, speaker, and rare disease advocate. She is also a mother of two boys with Duchenne muscular dystrophy. In this video, Jennifer discusses Rare Disease Day and her evolving role of Advocate to Industry consultant.
Dr. Collins began his talk by acknowledging that Rare Diseases are more relevant that ever with all of NIH’s 27 institutes and centers having some investment in rare disease research.