RIPAG

INTRODUCTION

The patient-centred care and patient empowerment are founding principles of European Reference Networks (ERNs). Patient organisations are integral to ERNs. Patient organisation participation enhances the capacity of ERNs to improve patient health outcomes and patient satisfaction.

EURORDIS, the European Organisation for Rare Diseases and its Council of European Federations promote the innovative approach of Patient Advocacy Groups (ePAGs) to facilitate a structured patient engagement process in the decision and opinion forming process of ERNs, and to ensure that they are involved and contribute actively to the mission, services and network activities of ERNs.

ePAGs are formed of patient organisations (both members and non-members of EURORDIS) within the scope of the specific grouping of each ERN. Each ePAG mirrors the ERN grouping of rare diseases. ePAGs will work collaboratively with ERN Healthcare Providers (HCPs) (full, associate and collaborative members) based on the operational criteria to be fulfilled to be an ERN and a HCP.

MISSION

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

RIPAG GOVERNANCE

RIPAG board:

Malena Vetterli
Autoinflammatory Diseases
FMF & AID Global Association
Merinke Kuiper
Autoimmune
Vasculitis Stitching
Johan Prevot
Primary Immunodeficiencies
IPOPI
Anton Gruss
Pediatric Rheumatology
ENCA
Julie Power
Autoimmune
Vasculitis Ireland
Diana Marinello
Autoinflammatory
Simba associazione italiana
Carlota Villar
Primary Immunodeficiency
Barcelona PID Foundation

RIPAG Council

Autoimmune

Zoi Anastasa – Vasculitis UK

Jaana Grönholm – Vasculitis Stitching

Eugenia Durante – APACS

Francesca Torraca – APACS

Autoinflammatory

Paul Morgan – FMF & AID Global Association

Rachel Rimmer – RACC-UK

Primary Immunodeficiency

Leire Solis – IPOPI

Jose Drabwell – IPOPI

RIPAG Members

RIPAG Members are Patient Organisations that have registered with EURORDIS to be engaged with the ERN RITA and RIPAG to:

  • collaborate on specific tasks (e.g. respond to surveys),
  • disseminate information about the ERN across their wider patient community,
  • be consulted occasionally for feedback, and
  • be kept informed on the development of the ERN and of the RIPAG.

Only Patient Organizations meeting all of the following requirements can apply to join RIPAG:

  • Represents a disease that belongs to the scope of ERN RITA diseases.
  • Acts in the interests of a relevant specific rare disease community.
  • Is registered and operating within Europe.
  • Any exception to the above criteria will have to be unanimously approved by the RIPAG Board.

To become a RIPAG Member, a Patient Organisation should contact the EURORDIS ERN team or register via the online registration portal. The organisation should indicate that it wishes to be engaged with RITA and identify a contact person who will act as the liaison between the Patient Organisation and RIPAG. The EURORDIS ERN team will inform RIPAG of any Patient Organisations who have expressed an interest in engaging with the ERN on a continuous basis.

RIPAG Representatives

Patient representatives taking part in RITA have come together to form RIPAG, the RITA Patient Advocacy Group. The mission of RIPAG is to safeguard the patient centric profile of the ERN RITA and contribute to the ERN RITA according to the critical roles played by patients and patient organisations, as experts through their experience and co-producers of knowledge in all ERN activities.

As ERN RITA represents four disease areas: primary immunodeficiency, autoinflammatory, autoimmune diseases and pediatric rheumatology, the patient groups collaborating within RIPAG also represent patients living with these diseases. For more information on the patient organisations participating per disease area, please refer to Patient organisations involved in RITA.

RIPAG patient representatives are committed to taking 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.

To ensure an active and meaningful participation in RITA’s activities, patient organisation representation is organised as follows:

  • RIPAG Members: Patient Advocacy Groups dealing with primary immunodeficiency, 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 RIPAG Patient Representatives actively discussing patient engagement in RITA Working Parties and ensuring patient representation throughout RITA’s activities.

Eligibility criteria for RIPAG Representatives

If you would like to apply as a RIPAG Representative, you have to:

  • be officially endorsed by one or more Patient Organisation and/or Patient Group
  • be experienced in living with the rare disease included under the scope of the ERN or hold relevant expertise corresponding to the scope of the ERN Transversal Working Groups
  • agree to adhere to the set of core values mentioned above
    be fluent in English (written and spoken)

Any exception to the above criteria will have to be unanimously approved by the RIPAG Board.
 

You must also provide all of the following documentation:

  • a short biography
  • a recommendation letter from their organisation
  • a copy of the patient organization registration document
  • a conflict-of-interest statement
     

EURORDIS will validate the request (based on a review of the documents provided by the candidate) and advise the RIPAG Board accordingly. Applications should be sent by e-mail to Lenja Wiehe: lenja.wiehe@eurordis.org. Failure to meet ALL of the four requirements is an automatic decline.
All candidates who meet the requirements must still be put before the RIPAG Board, who will then accept or decline the request and agree on the level of involvement of the candidates.

Documentation for download

RIPAG Statement Conflict of Interest form
RIPAG Code of Conduct and Ethics
RIPAG Non-disclosure agreement
RIPAG Terms of reference