- Vollständige liste
- Über ring14
- Chromosom 14-syndrom
- Families in the world
- Rd connect
- Ring14 international: development of a national-based patient association towards a “global” network
- Guideline recommendations for diagnosis and clinical management of ring14 syndrome
- A mother’s guide to good health & seizure control
RD CONNECTRing14 International has recently been recognized for establishing new important partnerships in the field of scientific research. Among the most innovative projects in biomedical research on rare genetic diseases is RD-Connect, a project financed by the European Community, which aims at developing new research tools. The project RD-Connect has set up a "Core Implementation Group" (CIG), a panel of experts whose task is to test and validate these tools before making them available to the community scientific.
For the expertise acquired in recent years in developing scientific programs, including their clinical database and biobanking projects, Ring14 International has been invited to become a member of IGC (http://rd-connect.eu/platform/registries/core-implementation-group/) of RD-Connect.
Marco Crimi, scientific coordinator of Ring14 International, states, “this is an important opportunity to cultivate relationships with international partners dealing with genetic diseases and conducting research designed to obtain results that can be quickly accessed by patients themselves".
"Since our inception, we have always been focused on scientific research", says Stefania Azzali President of Ring14 International. "We were small and little known, but thanks to the constant effort over the years, our projects, carried out to the highest standards of transparency and meritocracy, have continuously produced important medical and scientific results. Our attentive work collecting biological and clinical samples has opened us the doors of the international scientific community, who now consider us a credible partner with whom to collaborate."