Charities and patient groups registered to attend 2017

The following charities and patient groups have registered to attend the 2017 Genetic Disorders Leadership Symposium:

• 22 Crew
• Action Duchenne
• Albinism Fellowship
• AKU Society
• Alstrom Syndrome UK
• Amy and Friends
• Angelman Syndrome Support Education and Research Trust
• Aniridia Network UK
• Annabelle’s Challenge
• Ataxia UK
• Ataxia-Telangiectasia Society
• Bardet Biedl Syndrome UK
• Barth Syndrome Trust
• Batten Disease Family Association
• British Porphyria Association
• Brittle Bone Society
• Cambridge Rare Disease Network
• Cardiomyopathy UK
• CDKL5 UK
• Charcot-Marie-Tooth Disease UK
• CHARGE Family Support Group
• Child Growth Foundation
• Childhood Tumor Trust
• Chromosome 18
• Chromosome 18 Registry & Research
• Chronic Granulomatous Disorder Society
• Cleidocranial Dysplasia Support Group UK
• Cure & Action for Tay-Sachs Foundation
• Diamond Blackfan Anaemia UK
• dsdfamilies.org
• Ectodermal Dysplasia Society
• Facioscapulohumeral Muscular Dystrophy Support Group UK
• FOP Friends
• Findacure
• Fragile X Society
• Genetic Disorders UK
• HAE UK
• Haemochromatosis Society
• Haemophilia Society
• Headlines Craniofacial Support
• Hypermobility Syndromes Association
• Inclusive Skating
• Klinefelter’s Syndrome Association
• Little People UK
• LPLD Alliance
• Lipodystrophy UK
• Love Me, Love My Face Foundation
• Marfan Trust
• Max Appeal
• Metachromatic Leukodystrophy Association UK
• Micro and Anophthalmic Children’s Society
• myaware
• Neuro Foundation
• Niemann-Pick UK
• Norrie Disease Association UK
• Pachyonychia Congenita Project Europe
• PCD Family Support Group
• Phelan-McDermid Syndrome Foundation UK
• Pitt Hopkins UK
• Polycystic Kidney Disease Charity
• POPSY Charity
• Prader-Willi Syndrome Association
• Primary Immunodeficiency UK
• Rare Revolution Magazine
• Rett UK
• Reverse Rett
• Ring 20 Research & Support
• RP Fighting Blindness
• Sickle Cell and Young Stroke Survivors
• Sickle Cell Society
• Smith -Magenis Syndrome Foundation UK
• Soft Bones UK
• SOFT UK
• Teddington Trust
• Treacher Collins Family Support Group
• TRPS UK Support Group
• Unique
• Williams Syndrome Foundation UK
• Wolf Hirschhorn Syndrome Trust
• Wolfram Syndrome UK Support Group
• XLP Research Trust
• XP Support Group
• Zellweger UK