Winners of Global Gene’s First Annual RARE Patient Story Awards

May 4, 2015

Today Global Genes announces the winners of its first annual RARE Patient Story Awards. Out of ten fantastic candidates, three were voted on by the community as our first, second and third place winners. Interested in reading all the nominee’s stories? You can find them here.

When we encourage patients to share their story, we’re not just asking them to define their disease. We’re asking them to communicate to us an experience in their life where they have been scared, unsure, shut down and disempowered by the medical community. Long waits and multiple misdiagnoses, with few people in their lives who can empathize or provide emotional support—through our patient stories we ask readers for so much: to support each other, to encourage each other and to provide a new story of hope with each and every post.


We encourage all patients to share their stories on life with rare disease, to help give a face and a voice to the community and to help other patients to know that it is okay to be honest, optimistic, and brave as they face their disease.

First Place: “How Parenting a Dying Child Changed All My Expectations” by Daniel DeFabio


Second Place: “From One Parent to Another: You’re Doing The Best You Can” by Aine Keogh



Third Place: “Allison’s Rare Breathing Disorder: Taking Life One Breathless Night at a Time” by Allison Brown



The nominees were based on the following criteria:

  • Clear and thorough explanation of the patient’s experience
  • Attention to detail in terms of symptoms, treatments and diagnostic tests
  • Overall message of hope and perseverance

Thanks to the RARE Community for letting your voices be heard and selecting your top thee winners! Interested in being a nominee for next year’s RARE Patient Story Awards? Submit your personal story here.

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