Resources
Websites we’ve found genuinely useful: mobility and fun, information about AGS, and support for parents. All links open the organisation’s own site in a new tab.
Mobility & fun
- FiNiFuchsDE
Independent reviews of children’s mobility aids and equipment, tested in real family life.
- SIT’N’SKATEDE
WCMX and wheelchair skate workshops for kids and adults – rolling, falling and flying with confidence.
- WheelmapEN/DE
Crowd-sourced map showing which places are wheelchair accessible – and lets you add your own.
About AGS (Aicardi-Goutières syndrome)
- MedlinePlus Genetics (NIH)EN
Clear, plain-language overview of AGS from the US National Library of Medicine.
- GeneReviews: Aicardi-Goutières SyndromeEN
In-depth clinical review of AGS – useful to share with doctors and therapists.
- Orphanet: Aicardi-Goutières syndromeEN/DE
The European rare-disease portal: summary, specialist centres and patient organisations.
- Aicardi Goutières Syndrome (AGS) – Dr Lydia Green (YouTube)EN
Video: paediatric neurologist Dr Lydia Green (Leeds Children's Hospital) explains AGS – from Alex, The Leukodystrophy Charity (Alex TLC).
- IAGSA – International AGS AssociationEN/IT
International patient association for AGS families, supporting research and connecting parents.
Support for parents in Germany
- Kindernetzwerk e.V.DE
Umbrella organisation for families of children with chronic illness or disability – advice and parent groups.
- INTENSIVkinder zuhause e.V.DE
Self-help network for families caring for children with intensive care needs at home.
- bvkm – Bundesverband für körper- und mehrfachbehinderte MenschenDE
Advice, legal guides and local parent groups for families of children with complex disabilities.
- LEONA e.V.DE
Family self-help for rare chromosomal and genetic conditions, including contact with other families.
- ACHSE e.V.DE
Alliance for people with rare chronic diseases – advice service and links to patient groups.
- Familienratgeber (Aktion Mensch)DE
Practical guide to rights, benefits and local advice centres for families with disabled members.
- Bundesverband Kinderhospiz e.V.DE
Support and respite for families of children with life-limiting conditions, incl. the OSKAR helpline.
International support
- EURORDIS – Rare Diseases EuropeEN
The voice of rare-disease patients in Europe, with resources and community networks.
- Contact (UK)EN
UK charity for families with disabled children – helpline, guides and advice.
- NORD – National Organization for Rare DisordersEN
US rare-disease organisation with disease reports and patient support programmes.
- Global GenesEN
Global rare-disease advocacy network with free toolkits for parents and carers.
We’re parents, not doctors. These links are for information and support, not medical advice. Know a great resource we should add? Tell us.