The Rare Disease Diversity Coalition’s Jenifer Waldrop shares her insider strategies on advancing health equity for rare diseases through advocacy, partnerships, and policy change.
All tagged National Organization for Rare Disorders
#115 Dr. Daria Julkowska on The European Joint Program on Rare Diseases
Celebrate Rare Disease Month with the Coordinator of the EJPRD discussing rare disease research.
#98 Lydia Seiders on Aplastic Anemia
Maryland State Ambassador for NORD brings her passion for patient advocacy for the rare disease community including her daughter known as #EmmaStrong.
#77 Rare Disease Day 2018
Recap of CT’s event and interviews with Angelman Syndrome and ALD patient advocates
#67 Daniel DeFabio on Disorder: The Rare Disease Film Festival
Daniel speaks about the films to be screened at the festival and the film he produced about his son's rare disease, Menkes Disease.
#63 Rare Disease Day 2017
NORD's event in Hartford is recapped including interviews with a patient advocate, Michelle Cotton, and a Connecticut representative, Dave W. Yaccarino.