FindMySpecialist is a curated directory of doctors with proven, hands-on experience in rare and complex diseases — built by physicians, for patients who can't afford the wrong referral.
47+
Verified specialists
23
Rare conditions covered
128
Referrals this month
500+
Community members
Search by condition
Find doctors who treat your exact diagnosis — SMA, Fabry, EDS, and dozens more. Filter by location, specialty, and experience level.
Verified doctor profiles
Every specialist is reviewed before listing. See their years of experience, number of referrals handled, publications, and the conditions they treat most.
Patient community forums
Connect with others who share your diagnosis. Ask questions, share experiences, and get advice from patients and specialists in condition-specific communities.
Referral requests
Send a referral request directly to a specialist's office — as a patient, family member, or referring physician. Get a response within 2–3 business days.
Submit a specialist
Know a doctor with exceptional rare disease expertise? Nominate them. We verify credentials and add them to the directory so more patients can find them.
Free to use
FindMySpecialist is completely free for patients and families. Our mission is to make rare disease expertise accessible to everyone, regardless of geography or resources.
Conditions in our directory
Click any condition to find a specialist
Spinal Muscular Atrophy
Fabry Disease
Pompe Disease
Ehlers-Danlos Syndrome
Gaucher Disease
Marfan Syndrome
ALS
Duchenne MD
PKU
LAM
Alpha-1 Antitrypsin
Rett Syndrome
+ many more
Ready to find your specialist?
Join hundreds of patients and referring physicians already using FindMySpecialist to find the right care for rare diseases.
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Find specialists for rare & complex diseases
A curated directory of doctors with proven experience in specific rare conditions
All conditions
Neuromuscular
Metabolic
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Orthopedic
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Important: FindMySpecialist is an informational directory only. It is not medical advice and does not constitute a doctor-patient relationship. Always consult a qualified physician before making medical decisions.
6 specialists found
My profile
JD
Jane D.
SMA Type 2 Patient
Following 2 patients
Condition communities
SMA142
Fabry Disease89
Pompe Disease64
Ehlers-Danlos110
Gaucher Disease47
Marfan Syndrome58
SMA Community
142 members · 38 posts this month
Submit a specialist
Know a doctor with deep expertise in a rare condition? Add them to the directory so patients and referring physicians can find them. We verify all submissions before listing.
Your submission has been received. Our team will verify credentials and add this specialist to the directory within 2–3 business days. Thank you for helping patients find the right care.