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Centre for Metabolic Diseases

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Alliance of Genetic Support Groups 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

International Glaucoma Association Up to date Information and News about glaucoma

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 Hosts MARVIN a specialist search engine for health and medicine

KS1 Resources Free teaching resources

Lowe Trust The UK Lowe Syndrome Trust

Maple Syrup Urine Disease Family Support Group

Medicine Net

Mitochondrial Disorders

Myelin Project Dedicated to finding therapies for demyelinating diseases

National Gaucher Foundation

National Library NHS National Library for Health and Genetics

National Organization for Rare Disorders

National Urea Cycle Disorders Foundation

Niemann Pick Information about Niemann-Pick Disease (UK)

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

Tyrosinemia Support for families/groups affected by amino acid tyrosine: