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I am Elisia, I have 5q14.3 (MEF2C) deletion.

  • heathermason
  • Feb 10, 2024
  • 1 min read


Today is day 10 of our rare disease initiative. Today, Elisia's mum, Claire shares their journey of another ultra-rare condition, that only has 300 individuals worldwide. What does that mean for getting answers when a condition is that rare?


Elisia is a thrill-seeker, and loves water and roller-coasters.

Read her story below. Please share her story, it may just help one person looking for answers. Be part of someone's solution.

@MEF2CFoundation






 
 
 

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