Useful links
We’ve brought together all the legitimate sources of useful information that we’ve found and want to share with you. We only add links which are verified websites.
We add to this list regularly but if there’s anything you’ve found which could be useful please do contact us to share it.
Leukodystrophy and Rare Disease
- Global Leukodystrophy Initiative
- Genetic Alliance – UK
- Metabolic Support UK
- Genetic Disorders UK
- United Leukodystrophy Foundation – US
- European Leukodystrophy Association
- Leukodystrophy Resource and Research Organisation – Australia
- Philippine Society for Orphan Disorders Inc.
- Hunter’s Hope Foundation – US
- The Calliope Joy Foundation – US
- Leukodystrophy Australia
Condition Specific
- ALD Info
- ALD Connect
- The Stop ALD Foundation
- Fight ALD
- The Adrenoleukodystrophy Foundation
- The Myelin Project (ALD)
- Associazione Italiana Adrenoleucodistrofia Onlus
- Canavan Foundation (US)
- Canavan Research Foundation (US)
- CureCADASIL.org (US)
- CADASIL Together We Have Hope (US)
- Mission Massimo Foundation Australia (HBSL)
- Krabbe UK
- People Against Leigh Syndrome – US
- Archangel MLD Trust – UK
- MLD Support UK
- MPS Society – UK (MLD)
- MLD Foundation – USA
- Bethany’s Hope – Canada
- EDS – Ectodermal Dysplasia Society – UK
- Zellweger UK (www.Zellweger.org.uk)
- Cure GM1 – Canada
- MPS Society – UK
Bereavement
Bone Marrow Transplant
Financial Assistance and Grants
Healthcare
Insurance
Mobility and Equipment
Mental Health
Support and Advice
- Disability Rights UK
- Carers Direct
- Carers Trust
- Carers UK
- Queen Elizabeth Foundation for Disabled People
- Contact (for families with disabled children)
- Citizens Advice Bureau
- Rainbow Trust Children’s Charity
- Disability Living Foundation
- Cerebra
- Caudwell Children
- Young Minds
- The Disability Foundation
- Counselling Directory
- Sense
- Changing Places
- Royal National Institute for Deaf People (RNID)
- British Association of Play Therapists
- Wonderbaby – Children with Visual impairment
- Royal National Institute for the Blind (RNIB)