For further information on Alström Syndrome Patient Support Groups see:
RareConnect
Connecting rare disease support groups globally
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.
This article on Gene reviews provides a good review of the condition.
Orphanet
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.
Euro-WABB
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.
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.
ResearchGate
The latest papers on Alström can be searched here.
The latest papers on Alström can be searched here.
RareOmics
The latest scientific papers on rare diseases.
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.
England
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: t.g.hiwot@bham.ac.uk / tarekegn.hiwot@uhb.nhs.uk
Telephone: +44 (0)121 371 6982
Email: t.g.hiwot@bham.ac.uk / tarekegn.hiwot@uhb.nhs.uk
France
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: dollfus@unistra.fr / helene.dollfus@chru-strasbourg.fr
Italy
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,
Italy
Email: pietromaffei@libero.it
Spain
Prof Diana Valverde, Dept. Bioquímica, Genética e Inmunología, Facultad de Biología, Campus Lagoas Marcosende, 36310 Vigo
Email: dianaval@uvigo.es
Sweden
Professor Claes Moller MD, PhD, Dept Audiology, Orebro University Hospital, 70185 Orebro, Sweden
Telephone: +46 19703738099
Turkey
Doç. Dr. Selma DÜZENLİ, Abant İzzet Baysal Üniversitesi, Tıp Fakültesi, Tıbbi Genetik AD, 14280- BOLU-TR
Tel: +90 374 2534656/3083