European Patient Advocacy Groups (ePAG) Registration Form for Patient Organisations
European Reference Networks (ERNs) provide a unique opportunity to take rare disease patient care to the next level. ERNs for rare diseases have been created in the categories listed further below, and provide for the first time a unique opportunity to work cross border in Europe in healthcare where expertise is scarce. ERNs are required to involved patients and have open communication and engagement with the wider patient population.
If you are representing a patient organisation, this patient matchmaking tool is for you to register your patient organisation's interest in becoming a member of a patient stakeholder group called an ePAG that is linked to the specific ERN that you feel best represents your organisation. It is an online tool to enable patient organisations to be aligned and connected with these new ERNs in order to ensure an equitable patient voice within the system of ERNs.
Patients are involved in ERNs through elected patient representatives as well through these stakeholder groups. Patient representatives will directly liase with member organisations in each of the stakeholder groups so to ensure that the patient voice is heard in the development, programming and evaluation of each ERN’s initiatives and activities. EURORDIS also looks for additional patient representatives to be part of the governance of ERNs and ensure that representatives are part of all the sub-clinical areas and transversal groups of ERNs.
As a member organisation you will be involved in online ePAG communities and consulted on specific ERN relevant topics to reflect patients’ viewpoints through consultations. You will receive information and updates on ERNs and be continuously informed about ERN activities.
Read more about ePAGs here:
Rear more about ERNs here:
Name of patient organisation
Name of key contact person
Particular disease or specialised intervention that your patient organisation represents
Please copy the below link into your browser to find out which therapeutic grouping your disease belongs to:
Based on the therapeutic grouping that you have selected from the list at the above link, please choose the thematic grouping which the ERNs are being developed under by ticking a box below:
Rare bone diseases
Rare cancers (Adult solid cancers)
Genetic Tumour Risk Syndromes
Rare haematological diseases (including haematologic malignancies in adults)
Rare cardiac diseases
Rare connective tissue and musculoskeletal diseases
Rare craniofacial anomalies and ENT (ear, nose and throat) disorders
Rare endocrine diseases
Rare eye diseases
Rare gastrointestinal diseases
Rare hepatic diseases
Rare hereditary metabolic disorders
Rare immunological & auto inflammatory diseases
Rare malformations / developmental anomalies/and rare intellectual disabilities
Rare multisystemic vascular diseases
Rare neurological diseases
Rare neuromuscular diseases
Rare pulmonary diseases
Rare renal diseases
Rare skin disorders
Rare urogenital diseases
Transplantation in children
Rare & complex epilepsies
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