We have compiled a list of links to other relevant charities, organisations and sources of information regarding Cystinosis. If you feel there is something we should reference, or you find an incorrect link, please contact us – we encourage you to help us keep this site right!

Links to Cystinosis specific charities can be found on our Cystinosis Worldwide page.

Other Related Charities

• CLIMB – Charity for “Children Living With Inherited Metabolic Diseases”.
• Medic Alert – Charity providing medical identifying tags.
• National Kidney Helpline.
• Jenna & Patrick’s Foundation of Hope – raising money for Cystinosis Research.

Other Links

• Rare Diseases Community – a huge resource of articles from around the world.
• Wikipedia – a definition of Cystinosis.
• Orphanet – Database of rare diseases, including information on Cystinosis.
• Orphan Europe – Pharmaceutical company producing medicines for treatment of Cystinosis.
• Medical Help Panel
• Cystinosis Foundation Support Forum (based in the USA)
• British Association For Paediatric Nephrology – useful contact information for doctors and hospitals dealing with Cystinosis.
• British Kidney Patients Association
• Organ Donation Consider helping others and register as an organ donor.
• Rare Diseases Community Promoting awareness of rare diseases around the world.