Staying Connected

Staying Connected


Nancy Billon

August 23, 2024

In this episode we’re going to talk to Nancy Billon, who was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) with a combination of her medical history and a genetic test that revealed a VUS on COL3A1. 



Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org, loeysdietz.org, and marfan.org



If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit 



https://calendly.com/d/z7h-2cc-g33



Links to resources, events, and research opportunities: 



VEDS Collaborative Research Study: Email vedscoll@ohsu.edu 



Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:



https://marfan.org/calendar



Join a Walk for Victory:



https://marfan.org/walk/



Help and Resource Center

https://marfan.org/ask



https://loeysdietz.org/ask



https://thevedsmovement.org/ask



Support



Merch! You can now buy merch that helps you raise awareness of VEDS, Marfan, and Loeys-Dietz while supporting Staying Connected at my Printify pop-up store: https://staying-connected.printify.me/products 



You can also support this podcast by subscribing to my Patreon at https://www.patreon.com/Translucentone 



Thank you to all my patrons for supporting the show, and extra thanks to my top-tier Connected Patrons:



Jon Holtom
Adventuresinlove4Andie
Ashton Tanner
Ryan Rodarmer
Benjamin Weisman



Disclaimer 



The views, information and opinions in the podcast are solely those of the individuals involved and the information presented does not constitute medical or other professional advice or services. Any opinions I express in this podcast are my own, and not of my employer. 





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