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Whatsyourstory  1

Do you have a story to share?

Publication date: 12 Mar 2021

Every rare disease patient or parent has a story to tell.  Would you be willing to share yours with RareShare’s membership through a podcast or a newsletter article?  Doing so can inspire others to stay in the fight towards improving the lives of rare disease patients worldwide.  Shedding light on how you obtained a diagnosis, how you found medical professionals who understand your condition, and how you overcame a myriad of obstacles to live a life full of meaningful experiences, can be beneficial to those following a similar path.

If you’re not a patient or parent, we want to hear from you too.  Physicians, researchers, caregivers and rare disease advocates can share disease information, insights and experiences that can change lives only if the word got out.  By helping to sustain and improve the lives of patients, you are an essential part of the rare disease community.  RareShare’s members would love to hear from you.

Let us know if you would like to share your story by leaving a message in the Contact Us mailbox on  We will review all submissions and select stories that may be of greatest interest to our audience.  No one benefits if you stay silent.


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