Charities and patient groups registered to attend 2016

The following charities and patient groups attended the 2016 Genetic Disorders Leadership Symposium:

• 22 Crew
• 48XXYY Family Support Group UK
• AKU Society
• ALD Life
• Alstrom Syndrome UK
• Amy and Friends
• Angelman Syndrome Support Education and Research Trust
• Aniridia Network UK
• Annabelle’s Challenge
• Association for Multiple Endocrine Neoplasia Disorders
• ASYABI
• Ataxia UK
• Ataxia-Telangiectasia Society
• Bardet Biedl Syndrome UK
• Barth Syndrome Trust
• Batten Disease Family Association
• British Porphyria Association
• Cambridge Rare Disease Network
• Cardiomyopathy Association
• CDKL5 UK
• Charcot-Marie-Tooth Disease UK
• Chromosome 18
• Chronic Granulomatous Disorder Society
• Cornelia de Lange Syndrome Foundation
• Cure & Action for Tay-Sachs Foundation
• Cystic Fibrosis Trust
• Debra
• Diamond Blackfan Anaemia UK
• dsdfamilies.org
• Dwarf Sports Association
• Ectodermal Dysplasia Society
• Ehlers-Danlos Support UK
• Facioscapulohumeral Muscular Dystrophy Support Group UK
• FOP Friends
• Findacure
• Fragile X Society
• Genetic Disorders UK
• Global Genes
• Haemochromatosis Society
• Haemophilia Society
• Headlines Craniofacial Support
• Hypermobility Syndromes Association
• Ichthyosis Support Group
• Jnetics
• KCNQ2 Cure
• Klinefelter’s Syndrome Association
• Little People UK
• Lipodystrophy UK
• LPLD Alliance
• Marfan Trust
• Max Appeal
• Micro and Anophthalmic Children’s Society
• myaware
• Myotonic Dystrophy Support Group
• Myrhe Syndrome
• Neuro Foundation
• Noonan Syndrome Association
• Norrie Disease Association UK
• 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
• Pura Syndrome Patient Group
• Restricted Growth Association
• Rett UK
• Reverse Rett
• Rhizomelic Chondrodysplasia Punctata Support Group
• Ring20 Research and Support UK
• Roald Dahl Marvellous Children’s Charity
• 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
• Teddington Trust
• Together for Short Lives
• TRPS Support Group UK
• Tuberous Sclerosis Association
• Unique
• Williams Syndrome Foundation UK
• Wolf Hirschhorn Syndrome Trust
• Wolfram Syndrome UK Support Group
• XLP Research Trust
• XP Support Group