ALPE Foundation in the European Patient Advocacy Groups (ePAGs)

Inês Alves, our Scientific Advisor, in representation of ALPE Foundation, has been elected Patient Representative for the Rare Bone ePAG.

EURORDIS has a project that involves patient organisations to participate in the European Reference Network (ERN), that are decision-making processes and is supporting its membership to ensure a democratic process of patient representation.

For this reason, EURORDIS developed a European Patient Advocacy Group (ePAG) for each ERN disease grouping. Rare bone diseases is one of these groups.

ePAGs will bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process.

Collectively, ePAGs represent the perspective and interests of European rare disease patient organisations associated with ERNs.

It is important that patient representatives and clinicians evolve how they work together in the new system of ERNs. EURORDIS will continue to support patient representatives in developing this approach and in ensuring that they shape the development of ePAGs. ePAG patient representatives

ePAG patient representatives have an official permanent mandate to represent EURORDIS and the affiliated patient organisations. They will liaise with their affiliated patient organisations to ensure true and equitable representation of the patient voice in their respective ERN.

ePAG representatives are members in their respective ERN Boards. The role and function of ePAG patient representatives will be agreed with the ERN Network Coordinating Lead.

The role of ePAGS

- Ensure care is patient-centred and respects patients’ rights and choice;

- Promote and encourage a patient-centric approach in both delivery of clinical care, service improvement and strategic development and decision-making;

- Ensure transparency in quality of care, safety standards, clinical outcomes and treatment options,

- Ensure all ethical issues and concerns for patients are addressed, balancing patients’ and clinician needs appropriately;

- Ensure feedback and evaluation of patient experience;

- Contribute to the development of patient information, policy, good practice, care pathways and guidelines;

- Ensure the application of personal data rules, compliance of information consent and management of complaints;

- Advise on planning, assessment and evaluation of the ERN; and Ensure the needs of all people living with a rare disease are considered and included in the ERN discussions and activities, specific to the scope of their respective ERN.