Aula dei Gruppi Parlamentari, Camera dei Deputati - 74, via di Campo Marzio
31 october 2014
Programme (pdf, 26.6 KB)
Rare diseases are a public health concern worldwide and at European level, also for the unmet needs of people affected by these diseases and of their families.
Combined, rare diseases interest a considerable part of the population. In fact, although they are individually rare, with very different clinical characteristics, rare diseases are very numerous and share some common problems such as: severity (many are chronic and disabling), diagnostic and treatment difficulties, and scarcity of scientific knowledge. Therefore, they represent a challenge for all European countries, because no country has all the medical and scientific expertise to tackle all of them effectively.
Rare diseases are therefore a paradigmatic example of the need to establish Centres of Expertise that interconnect with national and European networks (European Reference Networks).
The European Commission has for some time been dealing with rare diseases in terms of priorities in public health and in scientific research by means of specific actions. Consequently, all Member States have pledged to adopt their own national plan for rare diseases. The Italian contribution in this field has been and remains important. In addition to the model offered by the institution of the national network dedicated to rare diseases (DM 279/2001), by the activities undertaken by the Regions and by many other institutions and patient organisations, the National Center for Rare Diseases (CNMR) of the National Institute of Health, through the European project EUROPLAN (www.europlanproject.eu), has elaborated the European recommendations for the development of the National Plans and has published the indicators for their monitoring. At the same time, the Center has been coordinating several interventions for capacity building in all EU countries.
During the International Conference, organized by the National Center for Rare Diseases under the auspices of the Chamber of Deputies, to which key national and European stakeholders will participate, the discussion will focus on the strengths of the Italian system and on the European guidelines regarding rare diseases – from healthcare pathways to the creation of networks. The aim is to share good practices, identify synergies and concrete modalities for transnational cooperation in order to face and overcome the many challenges posed by rare diseases.
In collaboration with: National Health Institute (ISS)
The event is open to the public. Registration site: https://www.surveymonkey.com/s/SWVSQVD
National Centre for Rare Diseases - National Institute of Health
Giorgio Vincenti, Linda Agresta, Giuseppe Bernardo, Stefano Diemoz