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!

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                   Podcasts

                                        

 

(List inspired by Fanconi Anemia Research Fund)

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Shwachman-Diamond Syndrome (SDS)

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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

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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.

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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)

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Business, Science, Policy

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Rare Perspective Podcast

Rare Disease, Cell & Gene Therapy Weekly Roundup

AI in Drug Discovery

An Arm & a Leg Podcast

Healthcare Policy Podcast

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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