Contacts and organisations
Useful contacts and organisations
Every clinic, association and named specialist on this site, in one searchable place. 51 entries. Search by name, city, country or what they do.
Smith-Magenis organisations
Associations around the world
Patient associations dedicated to Smith-Magenis syndrome, by region. Each name links to its website.
🌐 International network
PRISMS – Parents & Researchers Interested in Smith-Magenis Syndrome
PRISMS is an international organisation dedicated to supporting people living with Smith-Magenis syndrome, their families and professionals. It also helps connect the Smith-Magenis community internationally and supports collaboration, information sharing and resources across countries.
Switzerland
- Séquence 17SwitzerlandSwiss association dedicated to Smith-Magenis syndrome.
Europe
- Association Smith-Magenis 17 France (ASM17)France
- Pas à Pas avec Alexia – Smith Magenis Solidarité FranceFrance
- SIRIUS e.V. – Smith-Magenis-SyndromGermany
- Smith-Magenis-Syndrom ÖsterreichAustria
- Smith Magenis syndroom België vzwBelgiumfacebook.com/smsbelgie
- Smith-Magenis Syndrom ForeningDenmark
- Stichting Smith Magenis syndroom NederlandNetherlands
- Smith-Magenis ItaliaItaly
- Asociación Smith Magenis España (ASME)Spain
- Norsk forening for Smith-Magenis syndromNorway
- Smith-Magenis Syndrome Foundation UKUnited Kingdom
Americas
- Smith-Magenis Syndrome Research FoundationUnited States
- PRISMS – CanadaCanada
- Smith Magenis MéxicoMexico
- Smith-Magenis AssociationBrazilListed within the international PRISMS network.No website listed
- Smith-Magenis community / PRISMS networkPuerto Rico
Oceania
- Smith-Magenis Syndrome AustraliaAustralia
Other countries
- Russian SMS SocietyRussia
51 of 51 entries
- ClinicWashington, United States
Children's National Hospital
Smith-Magenis Syndrome Multidisciplinary Clinic
Roster published by: PRISMS Clinic and Research Consortium - ClinicCincinnati, United States
Cincinnati Children's Hospital
Neurobehavioral Psychiatry Clinic, SMS
Roster published by: PRISMS Clinic and Research Consortium - ClinicLewisburg, United States
Geisinger
Geisinger SMS Clinic, Developmental Medicine
Roster published by: PRISMS Clinic and Research Consortium - ClinicLexington, United States
Massachusetts General Hospital
Lurie Center for Autism
Roster published by: PRISMS Clinic and Research Consortium - ClinicSan Diego, United States
Rady Children's Hospital
San Diego Pediatric Neurology / Smith-Magenis Clinic
Roster published by: PRISMS Clinic and Research Consortium - ClinicChicago, United States
Rush University Medical Center
Smith-Magenis Clinic
Roster published by: PRISMS Clinic and Research Consortium - ClinicMemphis, United States
St. Jude Children's Research Hospital / Le Bonheur Children's Hospital
St. Jude/Le Bonheur SMS Clinic
Roster published by: PRISMS Clinic and Research Consortium - ClinicHouston, United States
Texas Children's Hospital
Smith-Magenis Syndrome Clinic
Roster published by: PRISMS Clinic and Research Consortium - ClinicGainesville, United States
University of Florida
UF Center for Autism and Neurodevelopment
Roster published by: PRISMS Clinic and Research Consortium - OrganisationFrance
ASM17 France
France
- OrganisationPerugia, Italy
ASM17 Italia APS
Italian SMS-specific patient organization
Rare-disease patient association
Roster published by: Italian National Rare Disease Portal - OrganisationSpain
ASME — Asociación Smith-Magenis España
National SMS-specific patient organization
ASME España
Lower confidence: Organization confirmed via a national rare-disease federation listing; no individual named officer could be confirmed, and no single office address was published, so this is a country-level point.
Roster published by: FEDER - OrganisationSpain
ASME España
Spain
- OrganisationFrance
Association ASM 17 France
President: Marie Schmitt
National SMS-specific patient organization (founded 1998)
- asm17.presidence@gmail.com
- +33 6 70 68 94 19
- OrganisationGenève, Switzerland
CORAIL — coordination des maladies rares et complexes de l'enfant
Care coordination, birth to 18
HUG, Hôpital des enfants
- +41 22 372 43 12
- centre.corail@hug.ch
- Rue Willy-Donzé 6, 1205 Genève
- OrganisationUtrecht, Netherlands
Dutch multidisciplinary SMS research group
Linders, van Eeghen, Zinkstok, van den Boogaard, Boot
's Heeren Loo Advisium / University Medical Centre Utrecht / Amsterdam UMC / Radboud UMC
No public contact details found.
Lower confidence: Authorship and institutional affiliation confirmed directly from the published paper; individual contact details were not researched.
Roster published by: PMC - OrganisationNazareth, Israel
EMMS Nazareth Hospital case-report team
Nijim, Adawi, Bisharat, Bowirrat
EMMS Nazareth Hospital / Galilee Medical School–Bar-Ilan University
No public contact details found.
Lower confidence: Single documented case report, not an ongoing SMS research program; no public contact found.
Roster published by: PMC - OrganisationEuropean Union / Norway
ERN-ITHACA
European Union / Norway
- OrganisationGenève, Switzerland
HUG — Centre de référence, syndromes malformatifs et troubles du développement
Prof. Marc Abramowicz, médecin-chef de service
Hôpitaux universitaires de Genève, Service de médecine génétique
Roster published by: HUG — Service de médecine génétique - OrganisationGenève, Switzerland
HUG — Centre des maladies rares
Information, orientation and coordination for rare diseases
Hôpitaux universitaires de Genève
Roster published by: HUG — Centre des maladies rares - OrganisationSuwon, South Korea
Korean SMS molecular-diagnosis case-report team
Lee, Hwang, Yoo, Kwon, Choi, Kim, Lee
Ajou University / Eulji University / Seoul Clinical Laboratories
No public contact details found.
Lower confidence: Named medical authorship confirmed; this is case-report-level evidence, not proof of a standing SMS specialty clinic.
Roster published by: Journal of Korean Medical Science - OrganisationKumamoto, Japan
Kumamoto University SMS case-report team
Momosaki, Kido, Matsumoto, Ozasa, Nakamura
Kumamoto University Hospital / Kumamoto University
No public contact details found.
Lower confidence: Named medical authorship confirmed; this is case-report-level evidence, not proof of a standing SMS specialty clinic.
Roster published by: PubMed - OrganisationUnited States
MedlinePlus Genetics
United States
- OrganisationEurope / international
Orphanet
Europe / international
- OrganisationBeijing, China
Peking Union Medical College Hospital SMS case-report team
Li, Zheng, Li, Guo, Ji, Shen
Peking Union Medical College Hospital
No public contact details found.
Lower confidence: Named medical authorship confirmed; this is case-report-level evidence, not proof of a standing SMS specialty clinic.
Roster published by: Medicine - OrganisationUnited States / international
PRISMS
United States / international
- OrganisationVuarrens, Switzerland
ProRaris — Alliance Maladies Rares Suisse
National umbrella of Swiss rare-disease patient organisations
ProRaris
- 021 887 68 86
- contact@proraris.ch
- proraris.ch
- OrganisationWeida, Germany
SIRIUS e.V.
German SMS-specific patient organization
Smith-Magenis Syndrome support organization
- 0171/4304182
- SIRIUS e.V.
- OrganisationMexico City, Mexico
Smith Magenis México A.C.
Founder and director: Cecilia Medellín Alarcón
SMS-specific patient organization in Mexico
Lower confidence: Weakened source quality: the current public evidence is a 2020 FEMEXER article and recorded interview with the founder, not a current official organisation website with live contact details.
Roster published by: FEMEXER - OrganisationNorway
Smith-Magenis Syndrom Foreningen
Norwegian SMS-specific patient organization
National patient organization
Roster published by: Smith-Magenis Syndrom Foreningen - OrganisationInnsbruck, Austria
Smith-Magenis Syndrom Verein Österreich
Austrian SMS-specific patient organization
National patient organization
- info@smith-magenis.at
- +43 650 9348381
- Austrian SMS organization
- OrganisationAustralia
SMS Australia
Australia
- OrganisationAustralia
SMS Australia
National SMS-specific patient organization
Smith-Magenis Syndrome Australia
Lower confidence: Organization confirmed; no standing SMS specialty clinic or named ongoing SMS medical-research program was confirmed in this pass. Its address is smsaustralia.org (given by Séquence 17, 2026-08-29; checked 2026-09-21); the former smsaustralia.org.au no longer resolves.
Roster published by: SMS Australia - OrganisationUnited Kingdom
SMS Foundation UK
United Kingdom
- OrganisationUnited Kingdom
SMS Foundation UK
Chair: Hazel Wotherspoon
SMS-specific UK patient charity
- info@smith-magenis.co.uk
- +44 300 101 0034
- OrganisationUnited States
SMS Research Foundation
United States
- OrganisationNetherlands
Stichting Smith Magenis Syndroom Nederland
Dutch SMS-specific patient organization
National patient foundation
- info@smithmagenis.nl
- +31 6 4715 7592
- Stichting SMS Nederland
- OrganisationBotucatu, Brazil
UNESP Botucatu SMS clinical genetics group
Vieira, Varela, Souza, Fett-Conte, Moretti-Ferreira and collaborators
São Paulo State University / Botucatu Medical School
No public contact details found.
Roster published by: PMC - OrganisationUnited Kingdom / international
Unique
United Kingdom / international
- SpecialistMemphis, United States
Andrea Gropman, MD
Division Chief, Neurodevelopmental Pediatrics and Neurogenetics
St. Jude Children's Research Hospital
Roster published by: St. Jude Children's Research Hospital - SpecialistBethesda, United States
Ann C.M. Smith, MA, DSc(Hon), CGC
Senior Genetic Counselor, Office of the Clinical Director, NHGRI; PRISMS PAB Chair Emeritus
National Institutes of Health
No public contact details found.
Lower confidence: Historical role and PRISMS advisory role confirmed; no current direct public contact was retained in the site data.
Roster published by: PRISMS - SpecialistLewisburg, United States
Barbara Haas-Givler, MEd, BCBA
Director of Education & Behavioral Outreach; Clinic Director
Geisinger SMS Clinic
Roster published by: PRISMS Clinic and Research Consortium - SpecialistBirmingham, United Kingdom
Chris Oliver
Emeritus Professor of Neurodevelopmental Disorders; Director, Cerebra Centre for Neurodevelopmental Disorders
University of Birmingham
Roster published by: University of Birmingham - SpecialistRome, Italy
Giuseppe Zampino, MD
Director, Pediatrics Unit; Coordinator, Rare Diseases Units
Fondazione Policlinico Universitario A. Gemelli IRCCS
Roster published by: Policlinico Gemelli - SpecialistParis, France
Hélène De Leersnyder, MD
Retired pediatrician, formerly Hôpital Necker–Enfants Malades / Hôpital Robert Debré
Formerly Hôpital Robert Debré
No public contact details found.
Roster published by: PubMed - SpecialistHamilton, Canada
Kerry E. Boyd, MD, FRCP(C)
Psychiatrist; GeneReviews co-author and PRISMS Professional Advisory Board member
McMaster University
Roster published by: GeneReviews - SpecialistReggio Emilia, Italy
Livia Garavelli, MD
Clinical Genetics Unit
Azienda USL-IRCCS di Reggio Emilia
Roster published by: ERN-ITHACA - SpecialistToronto, Canada
Marjan Nezarati, MD, FCCMG
Geneticist, Division of Clinical and Metabolic Genetics
Hospital for Sick Children / University of Toronto
No public contact details found.
Roster published by: Genetics in Medicine - SpecialistRome, Italy
Roberta Onesimo, MD
Pediatrician, Rare Diseases and Congenital Defects Unit
Fondazione Policlinico Universitario A. Gemelli IRCCS
- roberta.onesimo@policlinicogemelli.it
- +39 06 8881 8881
- SpecialistState College, United States
Santhosh Girirajan, MBBS, PhD
Department Head & T. Ming Chu Professor of Genomics; PRISMS PAB member
Penn State University
- sxg47@psu.edu
- (814) 865-0674
- SpecialistHouston, United States
Sarah H. Elsea, PhD
Professor, Molecular & Human Genetics; Chair, PRISMS Professional Advisory Board
Baylor College of Medicine
- elsea@bcm.edu
- (713) 798-5484
- BCM faculty profile