CHARITIES AND PATIENT GROUPS REGISTERED TO ATTEND 2018

The following charities and patient groups have registered to attend the 2018 Genetic Disorders Leadership Symposium:

  • 48XXYY Family Support Group UK
  • Aarskog Syndrome Foundation
  • Albinism Fellowship UK & Ireland
  • ALDLife
  • Alkaptonuria (AKU) Society
  • Alstrom Syndrome UK
  • Angelman Syndrome Support Education & Research Trust (ASSERT)
  • Aniridia Network UK
  • Annabelle’s Challenge
  • Association for Glycogen Storage Disease (AGSD) UK
  • 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
  • Caring Matters Now
  • Charcot-Marie-Tooth UK
  • Childhood Tumour Trust
  • Chronic Granulomatous Disorder (CGD) Society
  • Cleidocranial Dyplasia (CCD) Family Support Group UK
  • Climb
  • Congenital Disorders of Glycosylation(CDG) UK
  • Cure & Action for Tay-Sachs (CATS) Foundation
  • Cystic Fibrosis Trust
  • Cystinuria UK
  • Diamond Blackfan Anaemia (DBA)UK
  • Ectodermal Dysplasia Society
  • Ehlers-Danlos Support UK
  • Fanconi Hope
  • FAP Gene Support Group
  • Fibrodysplasia Ossificans Progressiva (FOP) Friends
  • Findacure
  • Fragile X Society
  • Genetic Disorders UK
  • Haemochromatosis Society
  • Harrison’s Fund
  • Headlines Craniofacial Support
  • Hereditary Angioedema (HAE) UK
  • Huntington’s Disease Association
  • Ichthyosis Support Group
  • Kabuki UK
  • Kleefstrasyndrome.org
  • Klinefelter’s Syndrome Association
  • Krabbe UK
  • Lipodystrophy UK
  • Lipoprotein Lipase Deficiency (LPLD) Alliance
  • Little People UK
  • Microphthalmia, Anophthalmia and Coloboma Support (MACS)
  • Marfan Trust
  • Max Appeal
  • MDJunction Klippel Feil Syndrome
  • Multiple Sulfatase Deficiency (MSD) Action Foundation
  • myaware
  • Myhre Syndrome
  • National Society for Phenylketonuria (NSPKU)
  • Neuro Foundation
  • Noonan Syndrome Association
  • Norrie Disease Foundation
  • Phelan-McDermid Syndrome Foundation UK
  • Pitt Hopkins UK
  • Polycystic Kidney Disease Charity
  • Prader-Willi Syndrome Association UK
  • Primary Ciliary Dyskinesia (PCD) Family Support Group
  • Primary Immunodeficiency UK
  • PTEN UK and Ireland
  • Reverse Rett
  • Ring 20 Research & Support UK CIO
  • RP Fighting Blindness
  • SATB2 Gene Foundation
  • Shwachman Diamond Syndrome (SDS) UK
  • Sickle cell and Young Stroke Survivors
  • Sickle Cell Society
  • Smith-Magenis Syndrome (SMS) Foundation UK
  • Soft Bones UK Hypophosphatasia Foundation
  • SOFT UK
  • Sohana Research Fund
  • TeddingtonTrust
  • TTR Amyloidosis Patient Association UK
  • Unique
  • Usher Kids UK
  • Williams Syndrome Foundation
  • Wolf Hirschhorn Syndrome Trust
  • Wolfram Syndrome UK
  • X-Linked Hypophosphatemia (XLH) UK
  • X-Linked Lymphoproliferative Syndrome (XLP) Research Trust
  • Xeroderma Pigmentosum (XP) Support Group
  • Zellweger UK