For further information on Alström Syndrome Patient Support Groups see:

rare connect alstrom syndrome
Connecting rare disease support groups globally

For further information on Alström Syndrome see:

Gene Reviews
This article on Gene reviews provides a good review of the condition.
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Orphanet is an online database of rare diseases and related services provided through Europe. It contains information on over 5,000 conditions and lists specialised clinics, diagnostic tests, patient and organizations, research projects and trials.

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The EURO-WABB Project is a collaboration of doctors, scientists and patient support groups from all over Europe. This website provides information on Wolfram Syndrome and other rare genetic forms of diabetes.
research gate alstrom syndrome
The latest papers on Alström can be searched here.
The latest scientific papers on rare diseases.

The following clinicians are working alongside Alström Europe. To download Alström Syndrome patient guidelines to give to patients click here.


Alstrom Syndrome UK has a wealth of information and knowledge relating to Alstrom Syndrome.
Coordinating specialist multidisciplinary clinics and clinical trials from Birmingham, Queen Elizabeth Hospital and Birmingham Children’s Hospital. Also, providing the only medical handbook and database of patients in the UK.
You can view full information on the the ASUK website here
Clinical Lead: Dr Tarek Hiwot, University of Birmingham, Edgbaston, Birmingham, B15 2TT, United Kingdom
Telephone: +44 (0)121 371 6982
Email: /


Professor Helene Dollfus
Institut de Génétique Médicale d’Alsace (IGMA) Centre de référence pour les affections rares en génétique ophtalmologique (CARGO) Service de  Génétique – Hôpitaux Universitaires de Strasbourg Laboratoire de génétique Médicale INSERM U1112 Faculté de Médecine
11 Rue Humann, F – 67000, Strasbourg
Tél: +33 (0)3 88128120
Email: /


Alstrom Italy has developed activities for families and professionals and disseminates research and clinical findings. The website can be viewed here

Dr Pietro Maffei
Laboratorio Endocrino Metabolico – Clinica Medica 3,
Dipartimento di Medicina,
Azienda Ospedaliera di Padova,
Via Giustiniani 2,
35128 Padova,


Prof Diana Valverde, Dept. Bioquímica, Genética e Inmunología, Facultad de Biología, Campus Lagoas Marcosende, 36310 Vigo


Professor Claes Moller MD, PhD, Dept Audiology, Orebro University Hospital, 70185 Orebro, Sweden
Telephone: +46 19703738099


Doç. Dr. Selma DÜZENLİ, Abant İzzet Baysal Üniversitesi, Tıp Fakültesi, Tıbbi Genetik AD, 14280- BOLU-TR
Tel: +90 374 2534656/3083