Wednesday, 21st February 2018
Registrations open 15th January 2018
The development of rare diseases therapies requires the right regulatory, economic and political ecosystem to ensure that investments are made in areas where research would not otherwise be carried out. The current European regulatory framework has brought enormous benefits to the rare disease community in terms of the number of orphan designations and indications, as well as paediatric medicines. (...)
EURORDIS is an umbrella association, a non-governmental patient-driven alliance of patient organisations representing 779 rare disease patient organisations in 69 countries.
We are the voice of 30 million people affected by rare diseases throughout Europe.
EURORDIS wants patient organisations to participate in European Reference Network (ERN) decision-making processes and is supporting its membership to ensure a democratic process of patient representation.
For this reason, EURORDIS has developed a European Patient Advocacy Group (ePAG) for each ERN disease grouping. ePAGs will bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process.
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.
Membership of ePAGs
Membership of ePAGs is open to all rare disease patient organisations (EURORDIS members and non-members based in the European Union). ePAGs can only benefit from the flow of ideas between a range of member organisations and representatives.
ePAG patient representatives
As of May 2017, there are over 100 ePAG patient representatives to represent the wider patient community in the development of ERNs. ePAG patient representatives have an official permanent mandate to represent ePAG member organisations. They liaise with these organisations to ensure true and equitable representation of the patient voice by participating in the Board and sub-clinical committees of their respective ERN.
The recruitment of these representatives is ongoing to ensure that patients are fully represented in the governance of each and every ERN. Patient representatives have already been elected to numerous ERNs but additional applications are welcome for all networks. Members and non-members of EURORDIS are encouraged to apply. If you are interested in becoming an ePAG representative please contact lenja.wiehe chez eurordis.org.
ePAG patient representatives must come from a patient organisation in the EU. 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.
ePAG representatives must adhere to the EURORDIS Charter of Volunteers. The number of patient representatives per ePAG is determined in collaboration with clinical coordinating teams of ERN applications and according to the scope of the respective ePAG membership.
EURORDIS is also implementing an ePAG leadership capacity-building programme, which will empower ePAG patient representatives with the knowledge and skills they need to be able to effectively participate in ERN activities.
Terms of Reference
ePAG Terms of Reference have been developed in consultation with EURORDIS members outlining the governance structure and working procedures of ePAGs. The Terms of Reference will be reviewed and revised to reflect the needs of ERNs.
In addition, a document describing the process for establishing ePAGs has been developed. Retour ligne automatique
The role of ePAGS
Specifically, ePAGs and ePAG representatives:
Contribute to the ERN Board to provide the perspective of patients on all relevant aspects of the ERN strategy, policy & organisational processes
Promote and encourage a patient-centric approach in both delivery of clinical care, service improvement and strategic development & decision-making
Advocate for care that is patient-centred and respectful of patients’ rights and choice
Provide the patient perspective on the application of personal data rules, compliance of information consent & management of complaints
Ensure that processes to address all ethical issues and concerns for patients are in place, balancing patient and clinical needs appropriately
Advise on transparency in quality of care, safety standards, clinical outcomes & treatment options
Advise on overall planning, assessment and evaluation of ERN activities and initiatives
Monitor the performance of the ERN by reviewing quality indicators such as clinical outcomes of diagnosis and treatment
Develop an ePAG feedback and evaluation framework across all ERNs to provide patient experience feedback of ERN and healthcare providers’ activities
Monitor and evaluate the adoption of patient feedback by the ERN based on patient experience surveys prioritising the objectives, work plan and service improvement in the network on an annual basis
Contribute to the development and dissemination of patient information, policy, good practice, care pathways and guidelines
Contribute to research e.g. defining research areas important to patients and their families and disseminating research-related information
Identify expert centres to join the ERN as a full member or affiliated partner
Provide an evidence-based patient perspective on the needs of people living with a rare disease and ensure all rare diseases are considered and included in ERN discussions and activities
Produce annual ERN evaluation reports
Collectively, ePAGs represent the perspective and interests of European rare disease patient organisations associated with ERNs.