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Rare Disease Conference 2024 - Rare Disease Summit
March 18-20, 2025
Pre-Conference Workshops on March 17, 2025Sheraton Philadelphia Downtown | Philadelphia, PA

Jonathan Cappiello
Young Adult Rare Representative at EveryLife Foundation


Jonathan Cappiello (he/him/his) is an ultra-rare disease patient from Connecticut. He has a condition that only 19 other patients globally have called 3-hydroxy-3methylglutral-COA Synthase deficiency.

Jonathan was born in 1999 as a seemingly healthy baby. After a near-fatal health scare in December 2000, Jonathan was diagnosed with a Long Chain Fatty Acid Oxidation Disorder. His Mom took her pain and turned it into a passion when she advocated for more advanced Newborn Screening Legislation to ensure other families didn’t go through what she endured.

Now, Jonathan is 25 years old and works in film and television production. He hosts a podcast called the 1 of 20 Podcast. He was fueled by a sense of purpose larger than himself and a profound passion for media and storytelling. He has interviewed incredibly inspiring individuals from this community in the realm of rare diseases. He is proud to share his story and the story of others.

Agenda Sessions

  • Embarking on the Extraordinary: Life's Journey with a 1 in 7 Billion Rarity