RIPAG

EPAG

EURORDIS has played a crucial role in the development of ERNs through the EU directive on cross-border health care, and has established 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. Patient organisations can become ePAG member organisations and patients can become ePAG representatives. Application via EURORDIS only will result in official installation of an ePAG.

PREREQUISITES FOR AN RITA-ERN EPAG REPRESENTATIVE:

  • Representation, with a clear mandate, of a national patient organisation for a (cluster of) rare RITA-ERN condition(s).
  • Good understanding of the English language, sufficient for adequate discussions and communication.
  • Experience/specific expertise from the patient’s perspective in rare endocrine conditions and/or one of the WG themes.
  • A clear awareness on time needed and available to spend on RITA-ERN specific activities with periodical feedback to the patient organization represented.
  • A few years of experience in running of, supporting of, and participating in a patient support group.
  • The patient group should explicitly guarantee the continuum of the representation, the follow up, and dissemination.

RECOMMENDED FOR AN RITA-ERN EPAG REPRESENTATIVE:

  • The patient group should be registered in the normal legers, tax (exemption) registered, and have a public accessible website.
  • The patient group should publish an annual report of its activities and its finances.

RIPAG organization is structured as follows:

John Mills
UK Vasculitis UK
United Kingdom
Peter Verhoeven
Vasculitis Stichting
Netherlands
Malena Vetterli
FMF & Aid Global Assiciation
Switzerland
Richard West
BEHÇET International
United Kingdom
Leire Solis, IPOPI

Mission

To safeguard the patient centric profile of the RITA ERN and contribute to the RITA network according to the critical roles patient and patient representations play,  as experts by experience and co-producers of knowledge in all ERN activities.

Over the next five years, as the ERNs reach full capacity, thousands of EU patients suffering from a rare or complex condition can expect to benefit.

Goals

To be a high value partner in the RITA network equal to and respected by all RITA Health Care Providers.

To play an active role in the RITA network by participating in each of the RITA Workgroups  in order to make sure patient involvement is provided in all these areas.

RIPAG

RIPAG Members:

Patient Advocacy Groups dealing with primary immunodeficiency´s, auto inflammatory or autoimmune diseases.

RIPAG Patient Representatives:

Individuals within a RIPAG member, having an official permanent mandate to represent their Patient Advocacy Group

RIPAG council:

A group of RIPAG Patient Representatives actively participating in RITA and/or RIPAG Working Parties.

RIPAG Board:

A group of ROPA

IPOPI: the global organisation for patients with PID

IPOPI is the Association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency (PID) patients worldwide. IPOPI represents a growing number of 63 National Member Organisations and over 59,000 PID patients globally. As such IPOPI acts as the global advocate of the PID patient community in all relevant policy, legislative and regulatory matters. Primary Immunodeficiencies (PIDs) represent a large group of more than 350 chronic and rare diseases in which the immune system or parts of the immune system do not function correctly.

IPOPI early commitment in ERN-RITA

IPOPI was the first patient organisation to be represented in ERN-RITA. IPOPI has played an important role in the inception of ERN-RITA bringing different stakeholders together and providing logistical support in the early days of the network. IPOPI is committed to ensuring a patient-centred approach is applied in all ERN-RITA’s activities. IPOPI works in collaboration with its national member organisations in Europe and ensures the optimal participation of PID patients in ERN-RITA.

RIPAG: an efficient cooperation

IPOPI has welcomed the collaboration with Eurordis’ E-PAG patient representatives who joined RITA at a later stage. Together IPOPI and E-PAG have formed RIPAG to ensure all patient communities dealing with primary immunodeficiencies, auto-inflammatory or autoimmune diseases in Europe are represented within ERN-RITA and can jointly and efficiently contribute to the network’s activities.

Website https://ipopi.org/