Sarita Edwards- Trisomy 18 Patient Advocate and Mother Artwork

Real Talk, Real World Data

“Real Talk, Real-World Data” is an original podcast series developed by Pulse Infoframe and hosted by Joshua Henderson, Head of Rare Diseases. Our show features patients and patient advocates, industry and researchers and their unique perspectives on the incredible potential of registries, natural history studies, and other real-world data.If you want to hear meaningful conversations about the value, the challenges and the impact of real-world data, then this is the place for you. Stay tuned for updates on new episodes and guests as well as highlights from the show.

All Episodes

Real Talk, Real World Data

Sarita Edwards- Trisomy 18 Patient Advocate and Mother

March 10, 2023 • Pulse Infoframe • Season 1 • Episode 8

April is Trisomy awareness month so we want you to hear from one of the most out-spoken patient advocates in this space, Sarita Edwards. Sarita is the co-founder of the E.WE Foundation, a charity with the goal of supporting families with a loved one diagnosed with Trisomy 18. Before that she had a son Elijah, who was born with this condition. At the time of Elijah's diagnosis, very little was known about Trisomy 18 and it was deemed incompatible with life with a life expectancy of only 2 years which resulted in some challenges in getting the proper care. Elijah is now 5 years old and continues to defy the odds that were set against him and his family at the time he was diagnosed.

Today Sarita is working to change the perception of Trisomy 18 among healthcare providers and also supporting other Trisomy 18 families through various programs at the E.WE foundation. You can learn more details at their website.

Stay up to date with Sarita's work by listening to her podcast series "Being Rare". Sarita puts out 1-3 minute episodes covering a range of topics that any patient advocate will find interesting.