There are 6 winners of the eighth edition of the Omar Award for communication on rare diseases and tumors, for a total of about 20,000 euros of awards distributed to journalists, communicators, associations and scientific societies who in 2020 distinguished themselves for the quality of information produced through news reports, campaigns, exhibitions, comics or other means of dissemination. These, therefore, are the numbers that marked the award ceremony which took place this afternoon in Rome at the Ara Pacis Auditorium and which from there was followed on the web thanks to the live streaming on the Observatory for rare diseases, a newspaper that reached daily about 20,000 unique users and more than 37,000 people with their social networks.
The recognition that Omar has been organizing since 2012 in collaboration with Orphanet Italia, the Telethon Foundation and the National Center for Rare Diseases of the Higher Institute of Health, this year has been enriched with two new partners: the Cnamc-National Coordination of the Associations of Chronically Ill Cittadinanzattiva and Simen-Italian Society of Narrative Medicine, which took part in the work of the Jury together with the representatives of the partners, namely Ability Channel, Ferpi-Italian Public Relations Federation and the ‘A rare look’ film festival.
“This year we have seen a strong change of themes and languages - explained Ilaria Ciancaleoni Bartoli, director of the Observatory for rare diseases, introducing the ceremony – If in the past there was a strong tendency to explain the pathological mechanisms of a disease, from 2020 instead, the focus has been more often on spreading messages relating to the quality of life and the themes of inclusion, shifting attention to the possibility of living with satisfaction study, work, family, sport, love and the game. And since these messages are addressed to a wide audience, and aim to change the way of relating with those with a rare disease, the languages have also changed: less didactic, more suitable also for an audience of young and very young people. give an explanation, it can be assumed that the whole world of rare diseases has made a great cultural step forward. The need to make individual pathologies known is partly satisfied, or in each case is believed that it is not the only important thing: we move on to shed a light on the right and the possibility of a full life. Perhaps also ‘thanks’ to the privations experienced by everyone during the pandemic, it was understood that having a fragility in the field of health does not sum up the whole of life “.
The awards assigned are one for each of the five competition categories – Journalistic award for press and web category, Journalistic award for audio-video category, Award for the best communication campaign ‘Professional category’, Award for the best communication campaign ‘Non-professional category ‘, Award for Best Disclosure through Photos, Comics, Illustrations and Art Installations – plus a Jury Award. The topics covered range from the story of life with various rare diseases, such as the Crigler-Najjar syndrome, cystic fibrosis, SMA (spinal muscular atrophy) and pituitary dwarfism, up to in-depth information on innovative and advanced therapies and cross-cutting awareness campaigns. to pathologies aimed at school children.
The winners of the VIII edition of the Omar Prize and the reasons for the recognition: Carola Pulvirenti, article published in Il Bugiardino, ‘Notte di luna pieno’ (Journalistic prize in the press and web category): for the language used in providing information and the ability to capture the reader’s attention; for the poetic vision with which the rare disease is faced; for the rigor with which the daily life of a person suffering from Crigler-Najjar syndrome was told. Angelica Giambelluca, report on Policy and Procurement in Healthcare, ‘Innovative therapies: potential for care and sustainability in Italy’ (Journalist award in the audio-video category): for the level of detail, the scientific rigor and the popular style used in accompanying the reader on a complex topic with a high impact on the natural history of people affected by rare diseases and tumors; for the effective and objective synthesis, which ranges from gene, cellular and genomic editing therapies to immunotherapy protocols, highlighting the problems and extraordinary opportunities of innovative therapies.
Digital Solution Srl, communication campaign, ‘Vite salate’ (Award for the best communication campaign ‘Professionals category’): for having contributed to giving a new face to cystic fibrosis, one of the most common rare diseases; for having undermined the vision of a disease that would undermine life expectancy and offer limited prospects for those affected; for the concrete and positive image it transmits, based no longer on renunciation of life projects, but on their complete realization even in the presence of the disease; for the excellent quality of the project; for the efficient declination on the various channels, for the informative force. Afadoc, communication campaign, ‘Progetto Bonsai’ (Award for the best communication campaign ‘Non-professional category’): for the effective simplicity with which pituitary dwarfism is treated, transmitting a positive and supportive message, applicable to all diseases affecting growth and stature; for the narrative ability that generates emotions; for the communication strategy capable of translating into effective and quality dissemination.
Nemo Clinical Centers and Sma Families, comics, ‘The adventures of SMAgliante Ada’ (Award for the best disclosure through photos, comics, illustrations and artistic installations): for effective, direct and innovative communication that used colors and impactful illustrations , aimed at school-age children, to whom they tell the daily life, the challenges and the adventures, of a dog suffering from Sma and convey the positive message of inclusion that goes beyond the disease.
Librì-Educational Projects, ‘More unique than rare – Stories of the boys of the III C’ (Jury Prize): for the impact of the project which reached 1,105 schools, 63,900 pupils and their families, engaging different channels of dissemination and formation; for the topics covered, which starting from the concept of rare disease and rarity made it possible to fully appreciate the individual values of each person; for the positive and inclusive message, as the feeling of being different brings all the children together.
The Omar 2021 Award, Medal of the President of the Republic, has obtained the patronage of the National Association of the Online Press (Anso), Journalistic Documentation Center, National Research Council (Cnr), European Federation of Patient Associations (Euridis), Italian Federation newspaper publishers (Fieg), Italian National Press Federation (Fnsi), Order of Journalists (Odg), Italian Periodical Press Union (Uspi) and Web Health Information Network (Whin). The award was made with the unconditional contribution of Alexion, Amicus Therapeutics, Amryt Pharma, Apr-Applied Pharma Research, Biogen Italia, Celgene-Bristol Myers Squibb Company, Chiesi Global Rare Diseases, GW Pharmaceuticals, Incyte, Novartis, Novo Nordisk, Pfizer, Piam, Ptc Therapeutics, Roche, Sanofi Genzyme and Takeda.
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