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 connect@sdsalliance.org. Enjoy!

                   Podcasts

                                        

 

(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 the fabulous 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

 

Real Men Podcast - Jacks Caregiving Coalition

Happy, Healthy, Caregiver Podcast

Dr. Ross Greene (including an episode on Back To School during the pandemic)

Business, Science, Policy

Rare Perspective Podcast

Rare Disease, Cell & Gene Therapy Weekly Roundup

AI in Drug Discovery

An Arm & a Leg Podcast

Healthcare Policy Podcast

Biopsychosocial / Impact / Advocacy

 

Diverse Perspectives on Health & Illness Podcast

RARE Cast

Rareshare

Openly Rare

Beyond Your DX

Ten Percent Happier

Meditation for Fitness Peeps

Sickboy

Misguided Notions Podcast

Disarming Disability

Nordcast (new by NORD)

 

Patient Stories

 

Rare in Common

Once upon a Gene (by Effie Parks)

 

Psychosocial (Kids)

 

Be Calm Ahway Island Bedtime Stories

Peace Out

Shwachman-Diamond Syndrome Alliance

To advance treatments and finding a cure for Shwachman-Diamond Syndrome.

Contact us:

Email: connect@SDSAlliance.org

Phone: +1-617-329-1838

Mail: PO Box 2441
          Woburn, MA 01888

Shwachman-Diamond Syndrome Alliance is a US based not-for-profit 501(3)c corporation, serving the global SDS community.

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