The National Multiple Sclerosis Week. He starts with the Scientific Congress of Fism (Italian Multiple Sclerosis Foundation) and the attribution of Rita Levi Montalcini award together with the award for the best poster, the roadmap of events promoted by Aism (Italian Multiple Sclerosis Association) to inform and raise awareness of multiple sclerosis, one of the most serious diseases of the central nervous system.
In a frame of monuments illuminated in red throughout Italy, Monday 30 May, World Multiple Sclerosis Day is celebrated, to be held simultaneously in 70 countries around the world. And just Monday, May 30th Aism will present the 2025 SM and related pathologies Agenda to the Chamber of Deputies in Rome: concrete proposals in the field of health, inclusion, research, information, the result of the consultation # 1000azionioltrelaSm which for over a year went through the entire SM movement, the institutions, the entire community, conceived and placed in the great challenges of recovery and development of the country, from the UN 2030 Agenda to the PNRR, to the relevant national policies and programs. An Agenda structured in mission lines, priorities, actions, supported by the data of the Multiple Sclerosis Barometer 2022 and based on the unavoidable rights of every person with MS and related pathology, family, caregiver, relaunched by a renewed Charter of Rights.
L’Aism event of May 30th it is also an opportunity to share and join the renewed Charter of the rights of people with MS and related diseases of Aism, already signed by over 60,000 people. A reinterpretation that consolidates the 7 rights already sanctioned in 2014: Health, Research, Self-determination, Inclusion, Work, Information, Active participation, re-proposed with even more strength, incisiveness, strategic vision and ideal aspiration, which are joined by 3 other rights clear from the widespread consultation: Education and Training, Simplification, Innovation, to form an authentic decalogue. “A charter that we ask to be signed by everyone because it is a pillar of the rights of people not only with SM but of all those who live with a condition of disability, serious pathology, fragility”, declares Francesco Vacca, president of Aism.
The new intervention map developed by Aism until 2025 identifies 4 mission lines for a total of 28 strategic priorities and 184 actions indicated for the improvement of the conditions of assistance, inclusion, participation of people with multiple sclerosis and related diseases and to overcome, together, the great research challenges. Mission lines that have a strong impact on people’s lives and on the community: interdisciplinary and person-centered taking charge, strengthening research, full social inclusion and participation, information, skills and empowerment. Each line, priority, action is rooted in evidence returned by the Barometer of the Sm 2022, which this year offers a reconstruction projected over 5 years, highlighting achievements but also critical issues and gaps to be addressed.
“An Agenda that accepts the new challenges posed by emergencies and the ever more sudden and uncertain change of the times we live in; which wants to be increasingly a part of the country’s and community’s agenda, transforming work priorities and new responses in the common good, within but also beyond the reality of multiple sclerosis and related diseases, diseases, disabilities. In this sense it is a concrete and innovative exercise of co-responsibility, co-programming and sharing, transparency and the ability to give an account, sustainability, resilience and recovery “, declares Mario Battaglia, president of FISM – Italian Multiple Sclerosis Foundation.
The barometer of the Sm. I’m the effects of Covid19 on the levels of social and employment inclusion are alarming; 9 out of 10 centers have activated or enhanced remote services for the Covid-19 pandemic but half report problems due to inadequate IT equipment. Only 1 in 2 patients get psychological support from the public system. Access to treatment is also still very difficult: more than 1 in 3 patients do not receive free symptomatic drugs, essential for the treatment of the disease. The complete photograph of the SM in Italy will be presented and commented on Monday 30 May.
On the occasion of the National Week of Multiple Sclerosis, Aism launches the video “The 10 things to know about multiple sclerosis” because, as the president of AISM Francesco Vacca says, “information is an indispensable ally to face the challenges of the MS”.
Furthermore, from Giulia Sara Salemi to Charlie Moon, to I’m not Kristiano, the most famous Tik Tokers on the web take the field to support the fight against multiple sclerosis with the ‘Appearance deceives’ campaign, promoted by Aism starting on Monday 30 May, on the occasion of the World Day, on the main social and TV channels. Appearance deceives’ aims to broaden knowledge about multiple sclerosis by clearly telling what it is, what it means to live with it and how much it affects people’s lives. To bring your own direct testimony there are Gloria, Asia and Elisa. Three young women, three different experiences, with one thing in common: multiple sclerosis.
The solidarity number to donate is 45512. The funds raised will go to support the study on the impact of the Covid-19 pandemic in the lives of people with MS and the project on the implementation of the Italian Registry for multiple sclerosis and related diseases, an essential tool for research and for the organization of health services. and social. The donation amounts will be 5 or 10 euros from a fixed network call Tim, Vodafone, WindTre, Fastweb and Tiscali, 5 euros from a fixed network call Twt, Convergenze and PosteMobile and 2 euros with SMS from a personal mobile phone WindTre, Tim , Vodafone, Iliad, PosteMobile, CoopVoce and Tiscali.
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