News for Patients

New initiative explores patient experiences in rare disease care to improve healthcare services and clinical guidelines development.

Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.

The EUProtects campaign showcases how European Reference Networks demonstrate EU collaboration in healthcare protection.

A collaborative research questionnaire developed to advance understanding of immune system function in CDG patients and caregivers.

A comprehensive collection of documents showcasing MetabERN’s achievements, future plans and educational materials.

An insightful analysis of five common myths about orphan drugs and their real impact on healthcare systems and rare disease treatment.

The members of the “conect4children” (c4c) initiative today announced the start of a large collaborative paediatric network that will facilitate the development of new drugs and other therapies for the entire paediatric population in Europe.

Chafea organised a kick-off meeting for five new rare diseases’ registries in Luxembourg on the 17th of April 2018, which involved 40 participants.

Health Commissioner Andriukaitis evaluates the first year of ERN operations and outlines key challenges for rare disease networks.

A critical request for blood and urine samples from metabolic disorder patients to maintain high quality diagnostic laboratory standards.

In February 2018, a European Parliamentary Meeting gathered healthcare leaders to improve diagnostic timelines for rare diseases.

Historical position statement from 24 ERN coordinators emphasizing the crucial need for European collaboration in rare disease treatment.