Introducing Our First Annual RARE Patient Story Award: VOTING NOW OPEN!

March 31, 2015

We are excited to announce our First Annual RARE Patient Story Award to honor many of the thoughtful and talented RARE Daily readers, who have decided to share their story with us and the rare disease community.

Each day, Global Genes receives multiple stories from patients all over the world, hoping to spread their story, advice and perseverance to others.

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.

There were many incredible stories to choose from this year, as you can read in our archives here.

This year’s nominees were selected on the basis of their story’s ability to communicate hope and inspire resilience. Their stories touched our hearts and the hearts of many of our readers.

Below are our 2015 RARE Patient Story Award Nominees.


Know your favorite story? Vote Above! If you don’t, read the stories below, pick your favorite, and vote!

Infantile Onset Krabbe’s Disease: How His Brother Saved His Life by Kristina Mendoza- Read Here.

How Parenting a Dying Child Changed All My Expectations by Daniel DeFabio – Read Here.

The Face of Barter Syndrome: Ethan’s Cure by Liliya Hoffman- Read Here.

From One Parents to Another: You’re Doing The Best You Can by Aine Keogh – Read Here.

“Have Hope,” says Bahcet’s Patient, “I Walked in Your Shoes” by Hannah Heinzig – Read Here

“I May Be Rare, But I am Still Me” Mom With EDS Demands Diagnosis by Maria Roach – Read Here. 

The Moment of My Daughter’s Diagnosis by Michelle Martinka – Read Here.

 The Difference a Diagnosis Makes: Knowing It Was Noonan by April Brownlee- Read Here.

Sara’s Army: My Fight Against Chronic Intestinal Pseudo Obstruction by Sarah Gebert – Read Here.

Allison’s Rare Breathing Disorder: Taking Life One Breathless Night at a Time by Allison Brown – Read Here.

Read the stories, pick your favorite, and vote for the best below!



Show your support for your favorite story; share your vote on social media using #RarePSA15!

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