Cystinosis Worldwide

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.

Europe Flag Cystinosis Network Europe

Eight European organisations (including ourselves) have come together to support people with cystinosis and promote research and form a network.
Irish Flag Cystinosis Ireland

The main charity for Cystinosis in Ireland.
French Flag Vaincre Les Maladies Lysosomales
French Flag AIRG France
Netherlands Flag Cystinosis Netherlands

The main charity for Cystinosis in the Netherlands.
German Flag Cystinose-Selbsthilfe (Cystinosis Self Help, Germany)

An organisation dedicated to supporting those affected with Cystinosis in Germany.
Italian Flag Italian Cystinosis Association

Founded November 2005.
Canadian Flag CARE: Cystinosis Awareness and Research Effort

Canadian based charity supporting research to improve the quality of life for Cystinosis patients.
USA Flag Cystinosis Foundation USA

The Cystinosis Foundation USA, supporting communities and research.
USA Flag Cystinosis Research Network

A USA based charity for Cystinosis research.
USA Flag Cystinosis Research Foundation

Also known as “Natalie’s Wish”, a USA based charity supporting research and education.
Mexico Flag 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.
Victor had been attending Cystinosis conferences in the USA for more than 10 years and at the July 2001 conference, after hearing from many families affected by the disease, decided to help support patients with Cystinosis, and in January 2002 the Cystinosis Research Foundation Mexico was born. To date, their achievements include:

  • Medical Support Awareness in Cystinosis at Mexican hospitals and Mexico medical conferences.
  • Cystinosis web pages in Spanish to help patients acquire Cystagon as part of a special program called Cystagon Patient Assistance (provided by Pharmacare & Mylan USA).
  • Future expansion to assist people in South America.
Venezuelan Flag Cystinosis Venezuela

Contact person: Dr. Alexander Mendez
Australian Flag Cystinosis Australia

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.
South African flag Cystinosis South Africa
The group was founded in May 2010 and aims to offer counselling and support services to families within South Africa.

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