August 11, 2022

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Sharing science is an opportunity for civilization

A great opportunity to contribute to the common good, and to do their part to make society more welcoming to all. In this spirit, we have envisioned at the International Space Station’s National Center for Rare Diseases (CNMR) the “Participatory Science to Improve the Quality of Life of People with Rare Diseases” project, funded by the Ministry of Health and implemented by a published Advertising Three committees (technical – operational, promotional and scientific) composed of researchers and representatives of citizenship, patients and institutions worked on the drafting.

A project with the power of disruptive democracy: Indeed, there is nothing more democratic than citizen science which is based on the active participation and according to solid and common standards of citizens in the process of scientific knowledge. The project also has the ambition to change the silo mentality in science, which often limits researchers to a particular sector, while participatory science, instead, requires constant interaction and exchange with other sectors. Moreover, this project also aims to engage people who, despite not having scientific technical skills or academic curricula, use their ingenuity and creativity to facilitate and improve the lives of others. Moreover, if, as in the case of people with a rare disease, they live on their own skin or on the skin of their loved ones, which leads them to act in the first person to try to solve them: the question of developing knowledge on the basis of first-hand experience, which can still lead to results effective.

Indeed, people with rare diseases and those around them, on the basis of their experience, are increasingly participating, along with health professionals, in treatment programs and their representatives sit at the tables of institutions. Therefore, the next step is that they can be innovators and developers of practical tools and solutions to live better in everyday life. For example, design a file An attachment to the cart Allowing you to support a disabled mother’s crutches while being pushed, or develop programs like emilyThanks to what girls with Rett syndrome can communicate faster and more effectively.

Citizen science has already established itself in many areas – to name a few: from monitoring bred birds as a participatory science project to reporting new bird species to mosquitoAn app to visualize and map the mosquito species prevalent in the area up to our own narrative medicine projects that have the potential to change the approach of care for both clinicians and patients. The innovative aspect of our initiative is the involvement of people in designing possible solutions to problems related not only to care but also to quality of life.

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The field, in fact, is broad: from mobility (and thus tools or strategies to facilitate movements and physical activities) to communication (such as the alternative use of computer aids and applications); From cognitive skills (eg alternative training methods, innovative learning solutions) to managing emotions (stress, anxiety, aggression), including strategies for independence in daily life, social inclusion, school and work.

The project is promoted by the network: the ideas and proposals that reach from civil society to the institutions are returned to the widest possible audience, passing through the streets and channels of the network. And in our case, the project starts with New location Created specifically (Scienzapartecipata.iss.it), it is an integral part of the inter-institutional portal malattierare.gov.it, as well as the social channels for rare green phone diseases of the International Space Station CNMR (Facebook, Twitter, Instagram, Youtube), from the RaraMente newsletter and the same free phone (800 89 69 49).

We therefore invite you to send contributions by next October to launch a virtuous circle of ideas and projects and to involve as many as possible in our participatory science initiative for the common good.

Review the webinar on “Participatory science to improve the quality of life of patients with rare diseases

Read the press release

Press Release 51/2022 – Participatory science, citizens, and institutions come together to gather and share ideas and projects in the service of people with rare diseases

Posted on 07/15/2022 – Edited on 07/15/2022

ISS, 15 July 2022 –

The Citizen Science call, wanted by the International Space Station and the Ministry of Health, is ongoing. A dedicated project site is operational as of today

Invitation to submit project proposalsParticipatory science to improve the quality of life for people with rare diseases”, coordinated by the National Center for Rare Diseases (CNMR) of the Istituto Superiore di Sanità and funded by the Ministry of Health as part of a broader collaboration agreement. From today until October 30, 2022, citizens, researchers, schools, associations and institutions will be able to share operational ideas, solutions, technologies and strategies in service of People with rare diseases, to help them concretely in the small and big challenges of each person.Day.Ideas and projects to be collected in a Site Specially created, shown here and available to everyone.

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The project, which benefits from three committees (technical – operational, catalytic and scientific), is presented today 15 July 2022 at 10:30 during the webinar, organized by the National Council for Scientific Research, “Participatory science to improve quality of life” (here link) To participate:https://www.malattierare.gov.it/eventi/dettaglio/4490).

“Citizen science represents a great opportunity to engage the community to actively participate in the common good – he says Silvio Brusaferro, head of the International Space Station – in a context that is facilitated by increased access to scientific information and digital tools. A project, which we present today, is characterized by cooperation between civil society on the one hand, and institutions on the other, in which members of civil society, often patients themselves or people “in the field”, think about and develop solutions, the latter to make them known, to share them on a special platform, to make them Available to all. In a kind of virtuous circle, where a solution tailored to a specific pathology could also be beneficial to people in similar circumstances.”

A wonderful initiative that we hope will bring tangible benefits – Announced Sunday Taruscio, director of the International Space Station’s National Center for Rare Diseases – aims to improve the daily lives of people with rare diseases and disabilities. We believe in the disruptive power of citizen science (“citizen science”) to break down barriers and overcome silos, that is, that way of conceiving science as a field in which certain skills do not need constant interaction and exchange with others, rather than involving as many citizens as possible to understand difficulties and thus participate. in designing possible solutions. We also expect other important outcomes from this initiative, such as increasing the dissemination of knowledge, enhancing the skills of people who are not necessarily qualified in the scientific field and increasing the awareness of society as a whole about rare diseases and disability in general.”

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“The participatory scientific project is part of the already proven fruitful cooperation with patient associations – says Sergio EvicoliDirector General of Communications and European and International Relations of the Ministry of Health – but at the same time represents an additional step in the direction of increasing the number of people invited to contribute together to improve the lives of patients and their families and proximity to institutions. The project itself is also part of the media campaign launched on the occasion of the recent Rare Disease Day that will connect with videos and information dedicated to raising awareness of the resources of the cross-institutional portal. www.malattierare.gov.it“.

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Participation is free, free and open to all citizens, researchers (regardless of age), schools, associations and institutions. Each contribution – made, under development or already developed – can relate to one or more of the following areas:

  • Mobility (such as tools or strategies to facilitate movements and physical activities);
  • autonomy/strategies to provide for daily needs;
  • Communication (such as alternate use of computer aids and applications);
  • Cognitive skills (eg alternative training methods, innovative learning solutions);
  • sports/leisure time;
  • managing emotions (eg managing stress, anxiety, aggression);
  • Strategies for social, school and work inclusion.

All accepted contributions – subject to evaluation by a multidisciplinary scientific committee composed of representatives of citizenship, patients, and health professionals – will be made available online periodically in the designated section of Cross-institutional portalon the associated thematic website of Participatory Science.

It will also be disseminated through various communication channels including the RaraMente newsletter and social networks (TW, FB, Youtube, etc) to the Rare Diseases Free Phone of the National Center for Rare Diseases at the International Space Station. The five contributions with the highest scores will be demonstrated through dedicated videos by December 2022.

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