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Founded in May 2016 by cystinosis groups from eight European countries we promise to work fast, so you will see here some more information soon.
Curious? You can download our flyer here for a first information.
Contact
Please use our address to contact us:
Cystinosis Network Europe
Beuthener Straße 15
D-40883 Ratingen
Germany
Tel. +49 2102 69627
Contact
Members
Cystinosis Ireland
Cystinosis Foundation UK
Dutch Cystinosis Group
AIRG France
Cystinose France
AIRG-España
Asociación Cistinosis España
Cystinosis Group Belgium
Associazione Cistinosi, Italy
Cystinose-Selbsthilfe e.V., Germany
and more to come …
Partners
Patients all over Europe living in countries not having a national cystinosis support group yet
EURORDIS – Rare diseases Europe
FEDERG – Fed. of Europ. Associations of patients affected by renal genetic diseases
European reference centers and competence centers for cystinosis
Health care providers and researchers in Europe and all over the world
The Networks’ challenges
Connecting
We are an all volunteer, non-profit organisation
We meet on a regular base to exchange and discuss achievements and unsolved problems not only in our own countries
We encourage new research projects
We connect patient groups and researchers networks
Supporting
We help families all over Europe to get contact with other families and clinics.
We inform patients and parents properly and continuously about their condition and what is going on in the “world of Cystinosis”.
We support patients’ and researchers’ projects (e.g. the development of international guidelines for treating cystinosis.
We are an active part in the search for one or more good forms of transition for teens and young adults.
Cystinosis is a rare disease, but we can make our voice heard and help our families to a better life.
