Episode drop of “It Happened To Me” with Kira Dineen sharing how genetic counselors can help people with rare diseases.
All tagged NORD
#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.
#93 Team Telomere
A community for telomere biology disorders discusses dyskeratosis congenita.
#77 Rare Disease Day 2018
Recap of CT’s event and interviews with Angelman Syndrome and ALD patient advocates
#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.
#60 Dan Donovan on Onevoice
Co-Founder/CEO of Onevoice shares how his new community building software solution supports the rare disease community.
#41 Rare Disease Day 2016
February 29th is the rarest day of the year and that means it's Rare Disease Day! Throughout the world NORD (The National Organization of Rare Diseases) has hosted Rare Disease Day events. I attended the Connecticut Rare Disease Day at the State House in Hartford and interviewed a few of the presenters including Jackie and Eloise Stager, founders of JaxLegacy, John Hopper, the director of the Fibrolamellar Cancer Foundation and Maddie Shaw, leader of Maddie's Herd.
#21 Rare Diseases Day 2015
Attend the Rare Diseases Awareness Event 2015 at UCONN Health Center on February 25th. Sophia Walker explains the celebration of individuals who have rare diseases and the many researchers and physicians who are fighting to find cures for these conditions.