Roe Nania

Roe Nania shares her family’s story with Vascular Ehlers-Danlos syndrome (VEDS). Roe’s brother, Angelo, was the first person diagnosed in the family, and died from an aortic dissection in 2019. After his death, more members of the family got tested and diagnosed, and it’s assumed that her father also died from VEDS.
Find more information, including support groups and webinars, about VEDS, Marfan, and Loeys-Dietz, at thevedsmovement.org (thevedsmovement...) , loeysdietz.org (loeysdietz.org) , and marfan.org (marfan.org) .
If you would like to share your story with VEDS, Marfan, Loeys-Dietz, or a similar condition on this podcast, visit
calendly.com/d...
Links mentioned in the episode:
BeloVEDS, a Nania Foundation:
belovedsfounda...
or
www.naniafoundation.org (www.naniafounda...)
Comedy Show on April 27th:
belovedsfounda...
Links to resources, events, and research opportunities:
VEDS Collaborative Research Study: Email [e-mail] (mailto:[e-mail])
Marfan Foundation/The VEDS Movement/Loeys-Dietz Syndrome Foundation Events:
marfan.org/cal...
Join a Walk for Victory:
marfan.org/walk
Help and Resource Center
marfan.org/ask
loeysdietz.org...
thevedsmovemen...
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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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