Links

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.
• 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
• 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.