The Patient Lens

Highlighting patients and care partners from around the world living positive lives despite the hurdles they face.
These are their stories, in their own words.

Heather’s Story: Hope Is The Fuel We Run On #PURASyndrome

March 13, 2017 by Jeri Burtchell

Heather Bowie shares the story of her son Aidan and his rare disorder known as PURA Syndrome in this week’s guest post. Read more about Aidan on his mother’s blog at Family Synapse http://familysynapse.com . For information about sponsoring or attending the PURA Syndrome Conference June 23-25, 2017 in Philadelphia, visit the PURA Syndrome Foundation website at https://www.purasyndrome.org/conference17. Also … Read more>>

Chelsea’s Story: Battle with Rare Disease

July 7, 2016July 6, 2016 by Zahra Ali

Chelsea Freund- At the age of 16 Chelsea left home to live on the campus of a public school for the Arts. From 18-21, she spent three spring-fall seasons on Mackinac Island in Michigan to earn money and gain experience. At 21, Chelsea and her friend took some time to travel and camp around the … Read more>>