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.
Ontdek al onze downloads
- Digitale patiëntenfolder 2024 ‘What is ADOA’ (Engels) >
- Digitale zorgverlenersfolder 2025 ‘More focus on ADOA’ (Engels) >
- Medicatielijst met relatief veilige medicatie 2020 (Engels) >
- Medicatielijst met medicatie die onveilig kan zijn 2020 (Engels) >
- Factsheet RNIB (Engels) >
Gedrukte brochures zijn verkrijgbaar in de formaten A4 en A5. Wil je dit onder de aandacht brengen van artsen en zorgverleners? Stuur een e-mail naar Hedy, dan sturen wij je de gedrukte brochures per post toe. Zo zorgen we samen voor meer zichtbaarheid van ADOA(-plus).
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
