USA based organisation
Ability Net
Acorns Children's Hospice
The Alkaptonuria Society (AKU)
Batten Disease Family Association (BDFA)
Batten Disease Support & Research Association (BDSRA)
Barth Syndrome Foundation
Information website and access to the foundation
CAH
Climb Congenital Adrenal Hyperplasia Support Group
CORD
Canadian Organisation for Rare Disorders
The Childrens Trust
Specialist information for children with complex health needs
Association of Childrens Hospices
Contact a Family
Contains a useful database
The Cystinosis Foundation UK and Eire
Department of Health and Children (Eire)
Department of Work and Pensions
Eurordis
European Organisation for Rare Disorders
Family Friendly Fun Website
Special needs family friendly fun
Fatty Oxidation Disorders
Family Support Group
Fundraising
Provides links to Charity Sites
Gauchers Association
Information about Gauchers disease
Gingerbread
Support for lone parents
Genetics Interest Group
Supporting those affected by genetic disorders
Glycogen Storage Disease UK
Basic information about Glycogen Storage Disease
Haemachromatosis Society
Support for people with GH
Health on the Net Foundation (HON)
Hosts MARVIN a specialist search engine for health and medicine
International Glaucoma Association
Up to date Information and News about glaucoma
KS1 Resources
Free teaching resources
Lowe Trust
The UK Lowe Syndrome Trust
Maple Syrup Urine Disease Family Support Group
Medicine Net
Mitochondrial Disorders
United Mitochondrial Disease Foundation
Metachromatic Leukodystrophy Foundation
MLD Foundation (USA) providing information, support and advice on MLD
Myelin Project
Dedicated to finding therapies for demyelinating diseases
National Library
NHS National Library for Health and Genetics
National Organization for Rare Disorders
National Urea Cycle Disorders Foundation
Information about Niemann-Pick Disease (UK)
NKH Support Group USA
Office of Rare Diseases
Organic Acidemia Association
Support group (USA)
Parent to Parent NZ
Parent to Parent New Zealand is an information and support network
Parents of Galactosemic Children Inc
PKU
News and information about Phenylketonuria (UK)
PKU
News and information about Phenylketonuria (USA)
Reyes Syndrome UK
Children's disease of the Liver and Brain
Royal College of Paediatrics and Child Health
Royal National Institute for the Blind
Scope
Support for organisation for cerebral palsy and campaign on general disability issues
Sense
Deaf Blind organisation
SSIEM
Society for the study of inborn errors of metabolism
Web Angels
Manchester Metropolitan University's Public Engagement Programme - who re-engineered the Climb Website
