I Don't Know How You Do It

Rare Disease, Real Conversation: A Dozen of Us Weigh In


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Life with a rare disease can be isolating and confusing. But as these 12 people can attest, there's so much more to the story -- the lessons are abundant, the paradoxes are persistent, and the community is full of passionate, inspiring, and resilient people.

In honor of Rare Disease Awareness Day on February 29th, tune in to hear some of the most powerful moments from past conversations with host Jessica Fein and members of the rare disease community.

Whether you're personally affected by a rare disease or want to understand the experience, this compilation episode delivers inspiration, insight and a reminder that while each disease may be rare, rare diseases as a whole affect hundreds of millions of people worldwide. 

You'll learn:

  • Why connecting with people who share something in common with you can be the most isolating thing of all
  • How to statistically increase your chances of getting help
  • Why living with rare disease brings so many paradoxes
  • What the rare disease anthem and motto should be
  • How hope can be a double-edged sword
  • Whether resilience is innate or developed over time
  • Specific ways to provide meaningful support to a friend who's hurting
  • And so much more...

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"This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode!

Also, if you haven’t done so already, follow the podcast. Follow now!

Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.com

Order Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes

Watch Jessica's TedX Talk

Music credit: Limitless by Bells

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I Don't Know How You Do ItBy Jessica Fein

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