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