EUROPESE SAMENWERKINGEN & NETWERKPARTNERS
Bij het nastreven van onze missie, visie en doelen werkt het ERN CRANIO-netwerk samen met andere deskundige netwerken en verenigingen op het gebied van zeldzame ziekten.
European Society for Human Genetics
The European Society for Human Genetics (ESHG) was founded in 1967 - a brief history is on another page. It is a recognised international non-for profit organisation, with its own statutes.
European Rare Disease Research Coordination and Support Action consortium (ERICA)
The aim of the European Rare Disease Research Coordination and Support Action consortium (ERICA), in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.
EURORDIS – Rare Diseases Europe
EURORDIS – Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 30 million people living with a rare disease in Europe.
European Rare Diseases Research Alliance (ERDERA)
The European Rare Diseases Research Alliance (ERDERA) kicks off this September 2024, with an estimated budget of 380 million euros and the aim of improving the lives of 30 million rare disease patients in Europe and beyond.
Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN)
To improve the accessibility of the ERNs for patients across Europe, the EU has funded a pioneering 3-year project involving all member states (MS) plus Norway and Ukraine.
Orphanet
Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases.