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@becsbuddy

@momdukes Try these 2 organizations. They should be able to help you find doctors.
Genetic and Rare Diseases:
https://rarediseases.info.nih.gov/
And, NORD , National Organization for Rare Diseases:
https://rarediseases.org/
Please let me know when you learn something!

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Replies to "@momdukes Try these 2 organizations. They should be able to help you find doctors. Genetic and..."

Thank you. I will definitely look into this lead and let you know the outcome.