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Join our Founder, Valeria McConnell as she hosts our podcast EveryDay Rare. Check  out our exciting and informative episodes on Spotify, Podchaser, Podcast Addict, or Podcast Index! 

Our Podcast

Remember to always take the R.A.R.E. approach

​R- Research organizations, therapies and trials. 

A- Align with the ones that suit you. 

R- Register for research. 

      IAMRARE    CoRDS   Orphanet 

E- Educate yourself, caregivers,  physicians, and others!

Would you like to invite us to be a guest on your podcast? 

Complete the form below and someone will contact you for more details. 

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