The Cystinosis Foundation UK is just one of several charities around the world that focuses on helping those with Cystinosis and promoting world-wide awareness and research. It is our intention to keep in contact with these organisations to help build a broader communtity and share our knowledge.
|Cystinosis Network Europe
Eight European organisations (including ourselves) have come together to support people with cystinosis and promote research and form a network.
The main charity for Cystinosis in Ireland.
|Vaincre Les Maladies Lysosomales
The main charity for Cystinosis in the Netherlands.
|Cystinose-Selbsthilfe (Cystinosis Self Help, Germany)
An organisation dedicated to supporting those affected with Cystinosis in Germany.
|Italian Cystinosis Association
Founded November 2005.
|CARE: Cystinosis Awareness and Research Effort
Canadian based charity supporting research to improve the quality of life for Cystinosis patients.
|Cystinosis Foundation USA
The Cystinosis Foundation USA, supporting communities and research.
|Cystinosis Research Network
A USA based charity for Cystinosis research.
|Cystinosis Research Foundation
Also known as “Natalie’s Wish”, a USA based charity supporting research and education.
|Mexican Association of Cystinosis
An association which helps support patients with Cystinosis in Mexico and Latin America.
The Mexican foundation was started in 2002 by Victor Gomez. Victor was diagnosed with Cystinosis at 8 months old and was initially cared for by the National Institute of Pediatrics (in Mexico City) with visits to San Diego for treatment and lab tests. He was treated with Cysteamine from the age of 1 and had a kidney transplant at 11 years old. He has studied English and computer systems and is currently working at a medical association which gives training to pediatricians.
Contact person: Dr. Alexander Mendez
A support group currently trying to attain charity status within Australia. The group raises money to support families affected by Cystinosis, produces educational material and raises awareness of Cystinosis.
|Cystinosis South Africa
www.charitysa.co.za/cystinosis-support-group-south-africa.html The group was founded in May 2010 and aims to offer counselling and support services to families within South Africa.