Episode drop of “It Happened To Me” focusing on the rare disease Wolfram Syndrome.
All tagged rrare disease
#219 It Happened To Me Podcast: Genetic Counselors for Rare Diseases
Episode drop of “It Happened To Me” with Kira Dineen sharing how genetic counselors can help people with rare diseases.
#75 Eden Lord on My City Med
Rare Disease advocate and caregiver shares on the resources she has created.
#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.
#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.