Charities and patient groups represented 2015

The following charities and patient groups were represented at the first UK Genetic Disorders Leadership Symposium:

• 48XXYY Family Support Group UK
• Action Duchenne
• A-T Society
• AKU Society
• ALD Life
• Alstrom Syndrome UK
• Amy and Friends
• Angelman Syndrome Support Education and Research Trust
• Aniridia Network UK
• Annabelle’s Challenge
• Ataxia UK
• Barth Syndrome Trust
• Batten Disease Family Association
• British Porphyria Association
• Cardiomyopathy Association
• Child Growth Foundation
• Children and Young People with Neurofibromatosis
• Chromosome 18
• Chronic Granulomatous Disorder Society
• Cleidocranial Dysplasia Support Group UK
• CMT United Kingdom
• Cornelia de Lange Syndrome Foundation
• Cure & Action for Tay-Sachs Foundation
• Cystic Fibrosis Trust
• Debra
• Diamond Blackfan Anaemia UK
• Dravet Syndrome UK
• dsdfamilies.org
• Ectodermal Dysplasia Society
• Ehlers-Danlos Support UK
• Facioscapulohumeral Muscular Dystrophy Support Group UK
• Faconi Hope
• FAP Gene Support Group
• FOP Friends of Oliver
• Fragile X Society
• Funny Lumps
• Haemochromatosis Society
• The Haemophilia Society
• Headlines Craniofacial Support
• Huntington’s Disease Association
• Hypermobility Syndromes Association
• Ichthyosis Support Group
• Jewish Genetic Disorders UK
• KCNQ2 Cure
• Klinefelter’s Syndrome Association
• Laurence-Moon-Bardet-Biedl Society
• Lily Foundation
• Little People UK
• Marfan Association UK
• Marfan Trust
• Max Appeal
• Micro and Anophthalmic Children’s Society
• myaware
• Myotonic Dystrophy Support Group
• Neuro Foundation
• Niemann-Pick Disease Group UK
• Noonan Syndrome Association
• PCD Family Support Group
• Phelan-McDermid Syndrome Foundation UK
• Polycystic Kidney Disease Charity
• POPSY Charity
• Prader-Willi Syndrome Association
• Primary Immunodeficiency UK
• Rasopathies Network
• Restricted Growth Association
• Rett UK
• Reverse Rett
• Rhizomelic Chondrodysplasia Punctata Support Group
• Ring20 Research and Support UK
• RP Fighting Blindness
• Rubinstein-Taybi Syndrome Support Group
• SENSE
• Sickle Cell and Young Stroke Survivors
• Sickle Cell Society
• Smith -Magenis Syndrome Foundation UK
• SOFT UK
• Spinal Muscular Atrophy Support UK
• Teddington Trust
• Treacher Collins Family Support Group
• TRPS Support Group UK
• Tuberous Sclerosis Association
• UK Thalasseamia
• Unique
• Wolf Hirschhorn Syndrome Trust
• Wolfram Syndrome UK Support Group
• Worster-Drought Support Group
• XLP Research Trust
• XP Support Group