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‚Äôs 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