Podcasts and other Media
relevant to SDS and Rare Disease
Today, the world wide web is rich with all sorts of media enriching the lives of SDS and other rare disease families. Below is a list of some highlights. If you would like to share additional resources, please email firstname.lastname@example.org. Enjoy!
(List inspired by Fanconi Anemia Research Fund)
Shwachman-Diamond Syndrome (SDS)
One episode on the Eureka's Sounds of Science podcast interviewing SDS patient and advocate Gracie van Brunt, with a focus on her story and music: https://eureka.criver.com/podcast/e27-my-rare-disease-does-not-define-me
Coming soon: The SDSF Live! show hosted by SDS moms Nicole Shen and Michelle Grenell of the Shwachman-Diamond Syndrome Foundation is being converted to podcast. In the meantime, it is available on their YouTube channel, here.
Caregiving & Parenting
Business, Science, Policy
Biopsychosocial / Impact / Advocacy