Cystinosis Network Europe
Cystinosis Network Europe is an alliance of organisations in Europe and beyond, working to support people living with cystinosis and to fund and promote research into treatments and ultimately a cure for the condition. The CNE was founded in May 2016 by cystinosis groups from eight European countries and has expanded to include representatives from Australia, South Africa and the United States. Cystinosis Ireland is currently providing the secretariat to the CNE, with Anne Marie O’Dowd holding the position of Chair. The current primary objective of CNE is to formalise the organisation and gain charitable status to reflect the importance of our work. You can find a poster about the work of CNE here.
CNE has a number of projects to support people living with cystinosis and their families. These include an international conference every two years and the development of a Worldwide Community Advisory Board for Cystinosis, with the support of EURORDIS, Rare Diseases Europe. Details of this are below. We also work on issues of communications, education and support for people with cystinosis and their families, and where appropriate we support patients to access medications and treatments in their home countries.
The next international conference will be held in Dublin, Ireland from 9 – 12 July 2020 – more details below.
The alliance of the members of CNE was cemented in 2017 when the Network came together to support those living with cystinosis who had been on an extended clinical trial for Procysbi. Those patients were threatened with removal of Procysbi by the company at the time in a bid to force a number of European countries to negotiate with the company. It was through a concerted and targeted campaign headed by CNE that the decision was reversed and the patients remained on Procysbi until market access was available in their countries. Some European countries still do not have access to Procysbi so the battle continues. The experience, however, strengthened the cystinosis patient group community worldwide and highlighted to the group the importance and power of the community when we come together for a common cause.
The members of CNE include representatives from
- Cystinosis Ireland – cystinosis.ie
- Cystinosis Foundation UK – cystinosis.org.uk
- Dutch Cystinosis Group – cystinose.nl
- AIRG France – airg-france.fr
- Cystinose France
- Asociación Cistinosis España – grupocistinosis.org
- Cystinosis Group Belgium
- Associazione Cistinosi, Italy – cistinosi.it
- Cystinose-Selbsthilfe e.V., Germany – cystinose-selbsthilfe.de
- Cystinosis Foundation South Africa – cystinosis.co.za
- Cystinosis Support Group Australia – http://www.cystinosis.com.au
- Cystinosis Research Network – cystinosis.org