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| The British Porphyria Association Aims to reach out to as many people as possible; patients, doctors, hospitals and research establishments in order to improve the understanding of this condition. www.porphyria.org.uk Prader-Willi Syndrome Association (UK) Supports people with Prader-Willi syndrome (PWS),their families, carers, and the professionals who work with them. www.pwsa.co.uk PAPAA - Psoriasis and Psoriatic Arthritis Association A resource of information and help for people with psoriasis and psoriatic arthritis in the UK. www.papaa.org Unique 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 Childhood Eye Cancer Trust (CHECT) A UK wide charity for families and individuals affected by retinoblastoma. Offers support and information, fund research and raise public awareness of this rare cancer. www.chect.org.uk Reye's Syndrome Foundation UK Provides funds for research into the cause, treatment, cure and prevention of Reye's Syndrome and Reye-like illnesses, to inform both the public and medical communities and to provide support for parents whose children have suffered from these diseases. www.reyessyndrome.co.uk Headlines - the Craniofacial Support Group Craniosynostosis may occur on its own in a child without any other problems and without any family conditions. www.headlines.org.uk Rubinstein-Taybi Syndrome UK Support Group Offers support to families and carers of those affected by Rubinstein-Taybi Syndrome (RTS), and raises awareness of RTS amongst the medical community and the general population. www.rtsuk.org Scoliosis Association (UK) Aims to provide information about scoliosis, eliminate fear and stigma, and offer contacts for shared experiences. www.sauk.org.uk Shwachman-Diamond Syndrome Offers information and support to sufferers and there families, and raises awareness of the syndrome and its implications among the medical profession, support agencies and the general public. www.shwachman.org |
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