We are looking for a contact person for Great Britain. Would you like to help other (parents of) patients? If so, please contact our board member Hedy Smit.
Discover all our downloads
- Digital patient leaflet 2026 'All about ADOA-plus' (English) >
- Digital patient brochure 2024 'What is ADOA' (English) >
- Digital Healthcare Provider Brochure 2025 'More focus on ADOA' (English) >
- List of relatively safe medications 2020 (English) >
- List of Medications That May Be Unsafe 2020 (English) >
- RNIB Factsheet (English) >
Printed brochures are available in A4 and A5 sizes. Want to bring this to the attention of doctors and healthcare providers? Send an email to HedyWe'll then send you the printed brochures by mail. This way, we can work together to increase the visibility of ADOA(-plus).
Visual impairment
The organizations below support people with visual impairment and their families.
RNIB – Royal National Institute of Blind People
Home Page: https://www.rnib.org.uk/
Phone: 0303 123 9999
Email: helpline@rnib.org.uk
Royal Society for Blind Children
Home Page: Royal Society for Blind Children
Phone: 020 3198 0225
Email: connections@rsbc.org.uk
Look UK
Home Page: LOOK – Supporting Visually Impaired Young People to Thrive
Phone: 07464 351958
Email: info@look-uk.org
Disabilities in general
Families of children with disabilities in any form can contact these organizations.
Contact
Home Page: Contact: the charity for families with disabled children
Phone: 0808 808 3555
Email: info@contact.org.uk
Mitochondrial diseases
The following organizations are specialized in mitochondrial/genetic diseases.
Lily Foundation
Home Page: The Lily Foundation
Phone: 0300 400 1234
Email: liz@thelilyfoundation.org.uk
Genetic Alliance
Home Page: Genetic Alliance UK
Phone: 0300 124 0441
Email: contactus@geneticalliance.org.uk
NHS Rare Mitochondrial Service
Home Page: Rare Mitochondrial Disorders Service
London, Oxford and Newcastle Centers – please see website for contact details for each area
