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Disabilities & Special Needs -Genetic & Rare SyndromesContact a Family- Medical Information- 0808 808 3555 Click on the A-Z of conditions icon, this will give you medical information on disabilities and rare disorders and details of support groups.** PLEASE NOTE** there may be a limit as to how many links you can view in one session ****This Part of the Ask Sam website is currently under construction so please re visit often for more updates. If you know of any non commercial websites that may be useful in this section please email them to: asksam@hotmail.co.uk**** REACT-020 8940 2575 React - Rapid Effective Assistance for Children with Potentially Terminal illness is a dynamic charity working to improve the quality of life for financially disadvantaged children with life-limiting illnesses living in the UK. Special Source The service has been created by UK professionals to give families, patients and other professionals understandable, regularly updated key information. The service holds information or references to over 3,000 conditions, thousands of condition relevant support organisations and hundreds of other bodies who offer related help or services. BIBIC-01278 684060 bibic is a national charity offering practical help to families caring for children with conditions such as, cerebral palsy, Down’s syndrome, developmental delay, traumatic and acquired brain injury and specific learning difficulties such as attention deficits hyperactivity disorder, dyslexia and dyspraxia. Bibic exists to help these children reach their full potential and live a fulfilling and more rewarding life. If you think that we could help you and your family click here for more information. Cystic Fibrosis Trust- Support helpline-0845 859 1000 Cystic Fibrosis is one of the UK's most common, life-threatening, inherited diseases The Cystic Fibrosis Trust deals with all aspects of Cystic Fibrosis Support helpline: 0845 859 1000 Benefits helpline: 0845 859 1010 Welfare helpline: 0845 859 1020 Down's Syndrome Association- 0845 230 0372 The Down's Syndrome Association's aim is to help people with Down's syndrome to live full and rewarding lives. We provide information and support for people with Down's syndrome, their families and carers, and the professionals who work with them. Muscular Dystrophy Campaign -0800 652 6352 We provide free care and support for babies, children and adults affected by muscle disease, fund world-class research to find treatments and cures, provide grants towards equipment and campaign to raise awareness and bring about change. Neurofibromatosis Association -Helpline 0845 6024173 Neurofibromatosis (NF) is a genetic condition. This means it belongs to a group of health conditions that can be passed on in families from one generation to the next through the process of genetic inheritance.If you are living with NF, at times you may need information and support*** We are the leading authority on the condition and have combined the day-to-day experiences of those living with NF and those working with them in order to provide a range of information leaflets for you to download, or you can contact us asking for the leaflets to be sent to you. Climb - 0800 652 3181 Mon-Fri 10am-4pm A national organisation working on behalf of children, young people and families affected by Metabolic Disease The Nottinghamshire Down's Syndome Support Group The Nottinghamshire Down's Syndome Support Group (NDSSG) was set up to offer support to families with children with Down's Syndrome. It aims to give an opportunity for parents and carers to give mutual support, a peer group for children with Down's Syndrome and for their siblings. We are affiliated to the Down's Syndrome Association. The fragile X Society -01371 875100 The Society’s Aims are to: provide support and information to fragile X families from those who share and understand their concerns and needs * educate and inform the public and professionals about fragile X in order to raise awareness and understanding of the syndrome and so improve the care of all people affected by fragile X Unique - Rarechromosome Disorder Support Group - 01883 330766 Unique runs telephone and email helplines for new and existing member families and professionals to find out more information about the group and about specific rare chromosomal disorders. |
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