On this episode of CoRDS Cast, Alyssa sits down with Haley Oyler and Lindsey Noonan to discuss the rare conditions their sons have, SETBP1.
Haley is the president and founder for the SETBP1 Society which brings awareness to this condition and unites families and researchers. While working with the SETBP1 Society, Haley also has a son with this condition and was diagnosed about 5 years ago with little information out there. Her hard work has paved the way for families to find a diagnosis at a young age.
Lindsay has a son with SETBP1 and was diagnosed at 7 months. Due to being diagnoses at such a young age, they were able to start early working on some of the issues that go along with this condition. Because of people like Haley, Lindsey’s son was one of the youngest children diagnosed with SETBP1.
This year on June 12th, 2021 the SETBP1 Society will participate in the Virtual Million Dollar Bike Ride. This annual festival brings together rare disease families, friends and supporters to raise funds for rare disease research and to spread awareness of rare disease. For more information please visit: https://www.setbp1.org/mdbr/
If you would like more information on SETBP1, you can visit: www.setbp1.org.
Thank you for listening!

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