Working together for people with rare and complex diseases

News 22/05/2018

Live broadcast of workshop with European Reference Networks on 29 May

The European Medicines Agency (EMA), together with RD-ACTION (the European Joint Action for Rare Diseases) and the European Commission's Directorate General for Health and Food Safety (DG SANTE), is organising a workshop on 29-30 May 2018 to explore how to work together with the European Reference Networks (ERNs) in the field of complex and rare diseases.

This is the last of a series of dedicated workshops planned and delivered under the RD-ACTION initiative since 2015, to support the 24 ERNs in addressing shared challenges. This event will, in particular, be an opportunity for EMA and ERNs to identify areas that would benefit most from closer collaboration.

The first day of the workshop, which will take place at the Agency's premises in London, will be broadcast live on 29 May from 9:00 to 17:30 UK time on EMA's website. The recording and presentations will be published after the event.

A rare disease is a life-threatening or chronically debilitating disease that affects no more than 5 in 10,000 people in the European Union (EU). It is estimated that around 30 million people are affected by a rare disease in the EU. An important objective of the workshop is to explore how EMA and ERNs can work together to best reinforce each other's efforts to encourage and facilitate research into new treatments for rare and low-prevalence complex diseases and how ERNs could be concretely engaged in EMA activities and structures.

ERNs are virtual networks bringing together healthcare providers and researchers from across the EU to tackle complex or rare medical conditions that require highly specialised treatment and a concentration of knowledge and resources. They link centres of expertise in different EU countries to share knowledge and facilitate the provision of care virtually. They aim to develop new innovative care models, boost research through clinical studies and ensure a more efficient use of costly resources.

The first ERNs were launched in March 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 EU countries.

EMA plays an important role in the development and authorisation of medicines for rare diseases, known as orphan medicines. The Agency's Committee for Orphan Medicinal Products (COMP) issues recommendations to grant orphan designation to medicines, and marketing authorisation applications for designated orphan medicines are assessed by EMA rather than in each Member State separately.


  • Project RD-ACTION ('677024'), has received funding from the European Union's Health Programme (2014 to 2020)

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