Welcome to the website for Assert, the Angelman Syndrome Support Education & Research Trust. We are a UK based charity whose primary aims are:
Support – supporting families and carers of people with Angelman Syndrome. Also providing support to professionals who meet AS individuals, even though they may meet very few individuals with Angelman Syndrome in their professional career.
Education – providing education and raising awareness of this rare neurological condition and the issues that surround it. As with many such conditions, Angelman Syndrome is not just about a simple diagnosis, but requires parents and carers to adapt as situations change and the individual grows older. We aim to provide information and advice for all ages, drawing on the vast knowledge of the trustees and our experts panel, some of whom are world renowned experts in Angelman Syndrome.
Research – assisting organisations and individuals in carrying out research into Angelman Syndrome and its many related areas. Much of this research has already provided great benefit to families and carers.
The aim of this website is to be a source of information for you, opening the doors on the world of Angelman Syndrome. There is a wide variety of information on these pages and much of it will be regularly updated so do check back regularly.
If you would like to become a member of Assert please contact us either via email email@example.com or on our telephone support line: 0300 999 0102.
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We have a provisional clinic date of 1st August 2013 and the clinic is to be held in Manchester. We are hoping to hold 3 or 4 clinics each year for both adults and children with AS. The clinics are being held for those who have a clinical need to meet with the professionals. We plan to see 3 or 4 families at each clinic, with each family having an hour for a full consultation with a clinical geneticist, Jill Clayton-Smith, a Paediatrician, Dr Dan Hindley, a Psychologist, Eric Taylor, a Physiotherapist will also be available and we are hoping to have a Speech Therapist, Dietician and other professionals present on the day. A representative from ASSERT will also be attending for the day to discuss ways in which we can support families.
Every patient is to be referred by their GP or other doctor sending a written referral to: Dr Jill Clayton-Smith, Genetic Medicine, 6th Floor St Mary’s Hospital, Oxford Rd, Manchester M13 9WL
80 percent of UK people with rare syndrome still to be found. More than eight out of ten people in the UK with a rare genetic condition could be missing out on crucial support because of a lack of a diagnosis.
We are very pleased to announce that the ASSERT conference in 2014 will be held at the Hilton Hotel in Coventry on Friday 29th August – Sunday 31st August