Chapter 06

Where expertise sits

Two designation systems, organized differently on each side of the Atlantic.

This site has not found a single global registry of SMS clinics. Two structures publish something close, and they are not equivalent.

United States — PRISMS consortium

The PRISMS Clinic and Research Consortium lists nine clinics designated specifically for SMS, at Rady Children's, Rush, Mass General's Lurie Center, Geisinger, Texas Children's, Children's National, St. Jude / Le Bonheur, the University of Florida, and Cincinnati Children's. PRISMS says each clinic is unique, families should confirm services in advance, and some, if not all, clinics may offer telemedicine instead of an in-person visit.

Europe — ERN-ITHACA

ERN-ITHACA is the EU reference network for rare malformation and intellectual-disability syndromes. This site's current directory snapshot includes 72 map records with coordinates, from many centres in Italy down to single country-level or hub entries. Its remit covers this group of conditions rather than SMS specifically, so it is not the same designation as a PRISMS clinic — but it is one public route by which a European family can look for this expertise.

Orphanet separately lists nationally designated expert centres per disease, including SMS (ORPHA:819).

In French — Orphanet and the national care protocol

Orphanet's French page on Smith-Magenis syndrome (ORPHA:819) gathers the French-language medical references: the 2021 national diagnosis and care protocol (PNDS) published by France's Haute Autorité de santé, Orphanet's emergency guidelines for the syndrome ("Conduite à tenir en urgence", 2011), and an overview written for the general public (2012).

France — GénoPsy at Le Vinatier (Lyon, Bron)

GénoPsy is a rare-disease reference centre at Le Vinatier, the university psychiatric hospital of the Lyon metropolitan area, with expertise in rare genetic conditions that come with behavioural, psychiatric or neurodevelopmental difficulties. That makes it potentially relevant for Smith-Magenis syndrome when those difficulties are significant. 95 boulevard Pinel, 69500 Bron · +33 4 37 91 51 63.

GénoPsy was suggested by Séquence 17. Ask the centre which ages it sees and how referrals work before planning a visit.

A country appearing on neither list has not been shown to lack expertise. It means this site has not found a disease-specific clinic roster for it.