Cystinosis Worldwide

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 community and share our knowledge.

	Cystinosis Network Europe cystinosis-europe.eu/ Eight European organisations (including ourselves) have come together to support people with cystinosis and promote research and form a network.
	Cystinosis Ireland www.cystinosis.ie The main charity for Cystinosis in Ireland.
	Vaincre Les Maladies Lysosomales www.vml-asso.org/
	AIRG France www.airg-france.fr/
	Cystinosis Netherlands www.cystinose.nl The main charity for Cystinosis in the Netherlands.
	Cystinose-Selbsthilfe (Cystinosis Self Help, Germany) www.cystinose-selbsthilfe.de An organisation dedicated to supporting those affected with Cystinosis in Germany.
	Italian Cystinosis Association www.cistinosi.it/ Founded November 2005.
	Cystinosis Research Network www.cystinosis.org A USA based charity for Cystinosis research.
	Cystinosis Research Foundation www.cystinosisresearch.org Also known as “Natalie’s Wish”, a USA based charity supporting research and education.
	Mexican Association of Cystinosis cistinosis.org.mx/ 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.
	Cystinosis Australia www.cystinosis.com.au 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.