(EO) Commission proposes complaints handling mechanism for networks that help treat rare diseases
Date of article: 11/03/2024
Daily News of: 14/03/2024
Country: 
EUROPE
Author: European Ombudsman
Article language: en
NEWS - DATE Monday | 11 March 2024
CASE 1900/2021/FA - OPENED ON Wednesday | 01 June 2022 - DECISION ON Monday | 18 September 2023 - INSTITUTION CONCERNED European Commission ( No further inquiries justified )
Following a suggestion from the Ombudsman, the European Commission has proposed the creation of a complaint mechanism through which people can raise concerns about the activities and functioning of European Reference Networks (ERNs)—virtual networks that help patients with complex or rare diseases by facilitating discussions between healthcare providers from across Europe.
The Commission is currently working on the exact complaint review process and will seek the input of the ERNs themselves as well as the Board of Member States that oversees them. The eventual implementation of the complaint mechanism will require the Member States’ approval.
The move to create a complaint mechanism follows an Ombudsman inquiry into how the Commission handled concerns about guidelines developed by an ERN for Pierre Robin sequence—a rare condition affecting a baby’s jaw and mouth.