Speech by Paolo Federici at the “Aortic Disease Awareness Day” of San Raffaele 19 September 2019.

At a European level, for some years now, 24 ERNs (European Reference Networks) have been set up, study groups within which all rare diseases are incorporated. Each ERN has joined one or more research centers and hospitals specializing in one or more rare diseases.

  • Then for each ERN an EPAG (European Patient Advocay Group) was activated, in short, we too have the people’s advocate … for the sick!At this point, we have taken stock of Italy: Italians are actively present and involved in 17 of the 24 EPAGs.
  • During the last meeting of Eurordis (which is the European federation of rare patient associations) the establishment of the EPAG ITALIA group was made official. Among other things, we are the first to have developed a national EPAG!

Specific objectives

Colon Cancer Screening: Is It Time for You to Start?ENHANCE the ITALIAN EPAG NETWORK: create a transversal container for the exchange of good practices of ePAG activity in ERNs and initiate or intercept training activities so that the expertise of our delegates can grow more and more.

REPRESENTATIVITY: making the fruit of our experience easily usable for national authorities with the presentation of proposals, requests and feedback through our representative bodies in order to facilitate the integration of ERNs in our national health system and be co-authors of functional improvements to the needs of the rare disease patient community.

COMMUNICATION: be promoters of knowledge of ERNs and the role of ePAGs in the medical community and not only through shared strategies and with the help of standardized materials that allow us to standardize the contents and form of our communication where possible

SUSTAINABILITY: Lobby to search for livelihoods and enhance the activities of Italian ePAGs.Ensure that care is centered on the patient and respects the rights and choice of patients.

Ensure transparency in terms of quality of care, safety standards, clinical results and treatment options.Ensure that ethical issues for patients are addressed by balancing clinical and patient needs.Contribute to the development of information, care pathways and guidelines for patients.

Provide advice on the planning, monitoring and evaluation of ERN initiatives.

What patients expect:Not to be subjected to a few tests.But not even to be subjected to too many tests.Avoid double examinations (when “changing” hospital).Avoid prophylaxis already tried and proved inefficient.Avoid the pain.Do only what is really necessary.

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