The Smith-Magenis Syndrome Foundation

The Smith-Magnenis Syndrome Foundation

Professionals Scientific and Clinical Advisory Group Committee Members:
Dr Orlee Udwin (Chair) Consultant Clinical Psychologist West London Mental Health Trust, London Professor Chris Oliver School of Psychology University of Birmingham Professor Peter Hammond Biomedical Informatics Unit Eastman Dental Institute London Dr Alison Male Consultant Clinical Geneticist Institute of Child Health London Anne M Smith National Institute of Health Bethesda USA Dr Carolyn Webber Clinical Child Psychologist London Dr Adrian Williams Lane Fox Respiratory Unit & Sleep Disorders Centre, St ThomasÕ Hospital, London	Dr Paul Gringras Consultant Paediatrician Newcomen Centre Guys Hospital, London Dr Daphne Keen Consultant Paediatrician St GeorgeÕs Hospital London Dr Jeremy Turk Consultant Child and Adolescent Psychiatrist St GeorgeÕs Hospital Medical School, London Ruth Jacobs Speech and Language Therapist London Associates: Dr Assunta Albanese Consultant Paediatric Endocrinologist St GeorgeÕs Hospital, London Dr Trevor Cole Consultant Clinical Geneticist Birmingham Women’s Hospital
To download the 'Professionals Contact Form', please click here The Smith-Magenis Syndrome Foundation (UK) has the huge benefit of being assisted by a Scientific and Clinical Advisory Group, which comprises of professionals working in the various fields such as research, psychology, genetics, sleep management, medication, behaviour, and related therapies. If you are a professional caring for an SMS child or adult, and would like to discuss issues with one or more of the committee members, please use the form below to contact. All information will be treated in a strictly confidential manner. ***Please note that this form is for use by professionals only. Families and other enquiries should continue to be sent to the Foundation through the usual method of emailing info@smith-magenis.co.uk Useful Web Links The Smith-Magenis Foundation (UK) has found a number of useful web site links which can be sources of information about topics related to people living with SMS. If you have any links that you think may be of interest to Members, please email them to us, and we will place them on these pages if appropriate. Parents and Researchers Interested in Smith-Magenis Syndrome - a US based Website which contains the most comprehensive information concerning research and diagnosis: www.prisms.org The Challenging Behaviour Foundation: Email network and family linking scheme for parents to share problems of challenging behaviour, regardless of disability. Also general advice and information. www.thecbf.org.uk Enable Together - aims to help disabled people lead a more independent life by providing free access to easy to understand information. This website allows people and organisations to share their knowledge and experience on a wide range of topics, including independent living, benefits, direct payments, support services, payroll and employment, holidays and breaks away, and much more. This website is an excellent resource for families and carers and provides information for disabled children as well as adults. www.enabletogether.co.uk Unique, the Rare Chromosome Disorder Support Group - Unique is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them. www.rarechromo.org Fledglings - is a not-for-profit organisation which helps parents and carers of a child with special needs of any kind to find simple, affordable solutions to practical problems. Call or email with your problem and they will do their best to help you find a solution. www.fledglings.org.uk Parent partnership services - are statutory services that offer information, advice and support for parents of children and young people with special educational needs (SEN) they will also be able to put parents in touch with other local organisations. www.parentpartnership.org.uk Independent Panel for Special Educational Advice (IPSEA) - give free and independent legal advice and support in England and Wales through helplines and website. They also give advice, support and representation (when needed) in appeals to the Special Educational Needs and Disability Tribunal. www.ipsea.org.uk