We have an English patient brochure available. In this brochure you can read the answers to the following questions:
What is ADOA?
How do you get it?
What does the Cure ADOA Foundation do?
What treatments are available?
What can you do yourself?
There are printed brochures available, in A4 and A5 format. Would you like to share this with your doctors and healthcare providers? Send an e-mail to mireille@adoa.eu and we will send you the printed brochures by post. In this way, we can work together to increase the visibility of ADOA(-plus).
In addition to the printed version, the brochure is available digitally here:
What is ADOA – digital patient brochure 2024
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.
Visual impairment
The organisations below support people with visual impairment and their families.
RNIB – Royal National Institute of Blind People
Homepage: https://www.rnib.org.uk/
Phone: 0303 123 9999
Email: helpline@rnib.org.uk
Royal Society for Blind Children
Homepage: Royal Society for Blind Children
Phone: 020 3198 0225
Email: connections@rsbc.org.uk
Look UK
Homepage: 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 organisations.
Contact
Homepage: Contact: the charity for families with disabled children
Phone: 0808 808 3555
Email: info@contact.org.uk
Mitochondrial diseases
The following organisations are specialised in mitochondrial/genetic diseases.
Lily Foundation
Homepage: The Lily Foundation
Phone: 0300 400 1234
Email: liz@thelilyfoundation.org.uk
Genetic Alliance
Homepage: Genetic Alliance UK
Phone: 0300 124 0441
Email: contactus@geneticalliance.org.uk
NHS Rare Mitochondrial Service
Homepage: Rare Mitochondrial Disorders Service
London, Oxford and Newcastle Centres – please see website for contact details for each area
