ERN ReCONNET European Patient Advocacy Group (ePAGs)
There are about 6,000 and 8,000 rare diseases affect an estimated 30 million people in the European Union. An unfortunate feature of rare diseases and complex conditions is the fragmentation of specialist knowledge, which is often not available in the patient´s region or country. Many patients therefore might not receive a satisfactory explanation for their symptoms, have delays to correct diagnosis or have access to the necessary knowledge on treatment options, rehabilitation and care.
EURORDIS initiated the ePAGs for each ERN to bring together rare disease patient advocates who are actively involved in the work of the ERNs.
The ePAGs are related to the 24 ERNs scopes, they work to align patient organisations and clinicians, experts and researchers working on the same rare/complex disease or highly specialized support.
The ERN ReCONNET ePAGs representatives are the voice of rare/complex patients, they work together with the Network clinicians and Coordination Team to develop every action, activity, and initiative aimed at supporting patients and their families and, at the same time, at facilitating the communication between them and the healthcare professionals.
The ERN ReCONNET ePAGs representatives are part of the Steering Committee and they are chairs of our 5 ERN ReCONNET Working Groups. They take part of our ERN ReCONNET webinars as speakers as well as moderator.
In addition, they have recorded short videos on several topics in English and their native language to reduce the language barrier.
A list of all the patient organizations that are part of our Network can be found here.
A collection of relevant documents and resources freely available to be downloaded can be seen here.
