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Eleonora Passeri

Rare Special Powers Community, Italy

Title: Special Sessions: Patient Advocacy Groups - The Rare special powers: Art, science, and patient groups

Biography

Biography: Eleonora Passeri

Abstract

The Rare Special Powers (RSP) project is aimed at combining science and art like during the Renaissance. RSP is a unique rare diseases advocating strategy across social media using art. The art I use in my social media is intended as beauty, not as art therapy approach. The strategy is built around the following key concepts:

  1. “Expert by experience” as a way of identifying patients and moms and, at the same time, to go behind the disease and meet the persons. This specific group of rare disease experts gain a huge amount of scientific knowledge on the disease –e.g. details and red flags- by living it every day and connecting with other families.
  2. Patient-centered health care system. In translational and clinical research, patients are the main focus and since they are “expert by experience”, it is critical have them actively involved in research projects and get from them important feedbacks or inputs. The entire research process would profit from such approach as the Portuguese association for CDG syndrome with the international CDG Research Network –CDG and allies PPAIN- and worldwide CDG families prove (http://www.apcdg.com/). They are addressing the immune system complications observed in CDG patients using a specific questionnaire done by patients, families, and scientists together. Also, I am a member of the newly established COST Action MINDDS – Maximizing Impact of Research in Neurodevelopmental Disorders- network and we are going toward this direction
  3. Communication. Diversify the social media platforms –Facebook, Instagram, Twitter, LinkedIn, website, Pinterest, etc.-, the format, and style used to do communication to reach as many people as possible with different backgrounds, culture, experiences, and expertise.
  4. Art. Art uses a universal language and it closes the communication divergent gaps – see point 3- and helps to create a common language with no need of any translation; furthermore, our brain is naturally attracted by beauty, which has its roots on the neuroaesthetics discipline (The Aesthetic Brain, Anjan Chatterjee, Oxford ed.).
  5. Leonardo da Vinci is “The” superb example of the Renaissance geniality, he perfectly combined art and science, and use art to propelled scientific discovery.