1. REQUIREMENTS FOR PATIENT ORGANISATIONS
Individuals cannot apply on a personal basis. Prospective applicants must be formally endorsed by a patient organisation that is legally registered and operates in Europe (in one of the 48 countries as defined by EURORDIS based on definitions by the EU, the Council of Europe and the WHO-Europe). This registration requirement can be waived in exceptional cases, due to the particularity of patient-driven organisations and of rare diseases, as well as for historical or contextual reasons.
2. REQUIRED SKILLS AND EXPERIENCE FOR ePAG ADVOCATES
- Have knowledge of, or experience of living with, one of the rare and complex conditions included in the scope of the ERN;
- Willingness and motivation to get involved, contribute actively to the discussions and work of the ePAG and the ERN working groups;
- Ability to work effectively, constructively with other patient representatives and clinicians from different EU countries;
- Ability to represent the interests of all represented diseases that are under the scope of the ERN, beyond their own disease.
- Ability to bring independent judgement from a patient representative perspective;
- Have an awareness of, and commitment to, equality, diversity and inclusiveness;
- High level of organisation and self-motivation;
- Understand the need for confidentiality;
- Able to communicate in English to be able to follow and contribute to meetings.
- Have computer skills and equipment to communicate through email, webinars, and videoconferences.
- Have knowledge, or is willing to acquire knowledge, on the rare disease policy environment.
- It is desirable to have experience working in a committee setting with clinicians and patient representatives.
3. ePAG ADVOCATE ROLE
- Work in partnership with other patient advocates, clinicians and researchers involved in the ERN;
- Champion the diversity of views of the ERN patient community, and not just to represent their own disease area nor their own experience;
- Support the ERN to disseminate information, primarily to the patient community, but as appropriate to other communities (e.g. healthcare providers, health authorities, clinicians and medical professionals and their professional bodies);
- Contribute where needed to the development of patient information, clinical practice guidelines, other clinical decision support tools and referral pathways;
- Contribute to other [insert name of ERN] collaborative activities where patient involvement is required, as appropriate;
- Provide input on ethical issues, and balance patient and clinical needs appropriately;
- Scout for or make recommendations for new patient organizations to cover under-represented disease groups or patients from other EU countries.
4. RESPONSIBILITIES
- Participate in the ERN working groups (depending on interests, expertise and availability);
- Participate regularly in the majority of the ePAG calls, and send apologies in advance if unable to attend;
- Report regularly in the ePAG calls and meetings on the progress of the work and projects in which they are directly involved in the ERN. If unable to attend, the update should be sent by email ahead of the meeting or call;
- Participate in the ERN annual meetings, where possible. Travel and accommodation expenses will be reimbursed subject to the ERN budgetary rules;
- Contribute to identify and develop the ePAG annual objectives and work programme;
- Contribute to the assessment of new applications for membership of the ePAG;
- Respect the confidential nature of the discussions when it is made clear that this is a requirement by the person who is chairing a call or meeting;
- Comply with the ERN conflict of interest policy;
- Adhere to the terms of the mediation agreement in the case of a mediation process described in the EURORDIS ePAG Constitution and Rules of Procedure.
ePAG advocates commit to adhering to the following set of core values:
- Respecting the mission of the ERN and its governance structure;
- Listening to the opinions and requests of others;
- Showing solidarity, mutual respect and support;
- Adhering to the principles of equity and social justice;
- Conducting themselves with professionalism in engaging with the clinical, research leads and fellow patient advocates.
5. TIME COMMITMENT
ePAG advocates will be required to attend ePAG calls approximately every two months that will generally take place during working hours.
They will also need to attend the calls of the ERN working groups in which they decide to be involved, as well as the ERN annual meeting, that is usually a full day meeting.
In addition, they will need to dedicate time to review and read documents ahead of the meetings and calls. This implies a commitment of typically 2 days per month and can increase to approximately 5 days per month in the case of the ePAG leads.
6. BENEFITS OF BECOMING AN ePAG ADVOCATE
ePAG advocates role and position in the ERNs give these representatives the possibility to:
- Work closely with clinicians, researchers, and other patient representatives to transform healthcare services and accelerate research to improve the health outcomes of people living with a rare disease in Europe.
- Participate firsthand in the development of the ERN objectives and infrastructure to ensure that it remains driven by patients’ needs.
- Increase their international exposure and expand their international network, specifically across Europe.
- Improve their understanding of healthcare models across Europe and European Reference Networks.
- Further develop soft skills such as communication, public speaking, conflict resolution, etc. acquired through trainings such as the ones provided by EURORDIS through its Open Academy, EUPATI and others, and through active participation in the ePAG.