Raising our country’s awareness of the difficulties that a person suffering from a rare disease must face: this is the objective of the #uniamoleforze campaign promoted by Uniamo – the Italian Federation of Rare Diseases, on the occasion of the 16th edition of the Rare Disease Day (February 28). Together with out-of-home awareness, with the branding of buses, trams and the subway in six Italian cities – reports a note – as many awareness events will be organized with the presence of the highest political and institutional offices. The social media campaign will involve influencers, people with rare diseases, associations and citizens, with coordinated graphics and focal points on patient stories. The video and podcast, made with the contribution of the unmistakable voice of Luca Ward, will be broadcast on TV and radio channels. Already confirmed Rai, Mediaset, Sky and various radios.
The campaign will be inaugurated on February 1 at the Ministry of Health, with the launch of the video and podcast, in the presence of Minister Orazio Schillaci. It will then stop in Pescara (February 3), Florence (6), Rome (15), Naples (16), Genoa (17) and Bari (20), to then arrive again in Rome on the 28th in the Senate for the closing meeting, the narration of patient stories and the final appeal to politics. You can participate in the campaign in various ways (information on https://uniamo.org/uniamoleforze/).
“This year’s campaign will touch various regions, because they are the fundamental institutions for taking care of people with rare diseases – declares Annalisa Scopinaro, president of Uniamo – It is necessary to ground the great system built in recent years, making feeling patients and their families less alone and ‘taken by the hand’ from the moment the first symptoms appear”.
The issues addressed – continues the note – are those that emerged from the working tables promoted by Uniamo, from the presentation of MonitoRare – the Report on the condition of people with rare diseases – up to the general status of rare diseases. Condensed in the ‘ephemeris’, Uniamo’s publications should guide politics and institutions in the coming months. The official hashtags of the initiative are: #rarediseaseday, #uniamoleforze and #rarimaisoli. The hashtag #uniamoleforze, which will cover the entire peninsula, wants to encourage all the players to join forces to optimize the system and achieve a real take-over that ensures early diagnosis, appropriate therapies, available and at home, structured pathways, social integration -health, links between specialization centers and the territory, research and experiments that offer hope for the future.
Rare Disease Day – also realized with the unconditional contribution of Alexion AstraZeneca Rare Diseases, BeiGene, Biogen Italia, Blueprint Medicines, Brystol Myers Squibb Company, Chiesi Global Rare Diseases, Csl Behring, Horizon, Medac Pharma, Ptc Therapeutics, Roche Italia , Sanofi Italia – has received the patronage of the Senate, the Italian Medicines Agency (Aifa), the National Research Council (Cnr), Agenas (National Agency for Regional Health Services), Fnopi (National Federation of Nursing Professions Orders), Fnopo ( National Federation of Orders of the Midwifery Profession), Fnomceo (National Federation of Orders of Surgeons and Dentists), Aopi (Association of Italian Pediatric Hospitals), Third Sector Forum, Italian Paralympic Committee (CIO), Orphanet, Terzjus, Telethon Foundation, Special Olympics Italy.
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