French National Programme on Rare Disease Cohorts
  The Rare Disease Cohorts Programme « RaDiCo » is coordinated by « Inserm », the French Institut of Health and Medical Research. RaDiCo is a part of the « Investissements d’Avenir » cohorts programme, managed by the National Agency of Research « ANR » IO-COHO-03.

Articles

December 2016: 23 European Reference Networks on Rare Disease approved!

“ERNs will provide for the first time a unique opportunity to work together in healthcare. The main goal is to support cooperation in healthcare where expertise is scarce and to facilitate access to high-quality diagnosis and medical care including the European added value by working cross border in this field. Proposed networks have to define how they want to communicate with each other (i.e. access to shared communication tools and assets to support e-health and teleconsultations) and what services they will offer such as sharing diagnostic tools etc. between collaborators within a single ERN.” (European Commission) 

What is an ERN?

“A network connecting health care providers and centres of expertise of highly specialised healthcare, for the purpose of improving access to diagnosis, treatment and the provision of high-quality healthcare for patients with conditions requiring a particular concentration of resources or expertise no matter where they are in Europe. For clinicians who network widely already, the ERN will represent the formalisation of their networking structures/practices in highly specialized healthcare. For those without specialist networking communities at present, ERNs will promote expertise and support health care providers in order to bring local, regional and national provision of healthcare closer to the patients.” (European Commission FAQs)

The ERN Projects

  • 23 ERNs were approved in December 2016. Detailed list is provided here.
  • Each one integrates at least 10 Healthcare Providers from 8 EU countries
  • ERNs gathering the best EU experts on Rare Diseases to face the challenges of rarity, benefit from EU cooperation, represent a home for every Rare Diseases Patient in Europe

Aims 

  • Link and pool existing highly specialised healthcare providers across the EU

– Institutionalize EU experts cooperation

– Concrete projects: communication, telemedicine, teaching, research, information dissemination and evaluation

– Overcome the challenges of rarity

  • Facilitate access to diagnosis and treatment in rare or low prevalence complex diseases or conditions

– Centralising: knowledge, experience, medical research, training, resources

– Reduce inequalities of treatment within the EU