Governance

Cystinosis Support Network Europe is registered in Ireland as a company and a charity. We are registered with the Revenue Commissioners and the Charities Regulator. Our work is informed by best practice guidelines as set out by EURORDIS (the European Rare Disorders Organisation); EFPIA; and the Irish Pharmaceutical Healthcare Association.

Our board of directors represent the membership of CNE, balanced by the statutory requirements as set out by the Irish regulators. Our board members are parents of people with cystinosis from Ireland, Germany and the Netherlands.

Cystinosis Network Europe is kindly hosted by Cystinosis Ireland, which provides the registered address and the secretariat.

You can access CNE’s annual audited accounts and annual reports below:

Cystinosis Support Network Europe has a working relationship with and receives funding from the following companies:

CNE is open to working with all pharmaceutical and healthcare companies with an interest in treating cystinosis through various forms of therapies. CNE is funded through educational and project grants from pharmaceutical and other companies.