Rare diseases

14,053,915 euros: Final scoreboard of La Marató 2019 for rare diseases

The 2019 edition of La Marató de TV3 and Catalunya Radio, dedicated to rare diseases, reached a final total income of €14,053,915, the second highest in the history of the project. The programme broadcast on 15 December ended with a provisional scoreboard of 9.4 million, which rose with the 4.6 million given by the public up to 31 March, when the period for donations finally closed. This is the highest increase in the 28 editions of the charity programme.

Núria Llorach, first deputy chair of the Catalan Media Corporation and of the Fundación La Marató de TV3, welcomed the great result: "With the edition on rare diseases, which are largely unknown because there are so many of them and they are so complex, La Marató evolved more than ever to bring together the people who make it possible all over Catalonia in a great act of public collaboration. This effort received an exceptional response from the people of Catalonia and we thank them very much for every gesture, every donation, every action of solidarity that has gone to make this final scoreboard."

The latest Marató totally changed the format and covered more ground than ever before. For the first time the programme ventured out of the studios of TV3 and Catalunya Radio, and was made simultaneously from six locations: a bus as a travelling studio that drove all round Catalonia, the football field of the Unió Esportiva Olot, the municipal sports centre in Olot, the Teatre Ateneu in Tàrrega, the Teatre Fortuny in Reus and the Teatre Aliança in Poblenou. The television stations of the Local Audiovisual Network also participated. With the slogan "Minorías que hacen una mayoría" (Minorities that make a majority), La Marató was broadcast for six hours live on the radio show hosted by Roger Escapa, and for almost 18 hours on television, presented live by Quim Masferrer accompanied by Josep Cuní, Mónica Terrribas and Jordi Basté, together with many more professionals of TV3 and Catalunya Radio who, as every year, brought so much passion and emotion to this project.

The participation of the public was one of the high points of the day, with figures that showed the massive and enthusiastic public response to the call to support awareness-raising and research into uncommon diseases: more than 4,000 activities across Catalonia involving more than a million participants, 5,700 information talks in schools, libraries and civic centres, and 3,400 call centre volunteers answering the calls making donations.

With this year's funds, La Marató has raised €201,990,291 since 1992, which has made it possible to fund 872 research projects on a wide range of serious and chronic diseases, bringing improvements in the quality and expectation of life of the general public, who have also become more aware of these diseases.

The funds from La Marató 2019 will boost research on rare diseases

The rare diseases are infrequent ones that affect a maximum of five people in every 10,000. Currently some 7,000 have been described and around 80% are of genetic origin. They vary greatly among themselves but they have the common factor of being serious, chronic, progressive and disabling. In Catalonia it is calculated that 400,000 people have a disease of this type.

Improving the quality and expectation of life of people who live with diseases of this kind is the goal of the biomedical research that will be promoted with the funds raised in La Marató 2019. This is done, the experts say, by designing tests to detect them at the moment when they first appear, reducing the time of diagnosis, and having efficient, appropriate, safe treatments, gene therapy for example.

The Fundación La Marató de TV3 will fund the research projects that are best valued among the 228 that were presented in the call for grant applications made in February and March. Currently, international scientific experts in rare diseases are reviewing the candidate applications in a process of evaluation co-ordinated by the Catalan Agency for Health Technology Assessment and Research (AQuAS) of the Department of Health. Each project will be scored by three assessors according to the quality, methodology, scientific, health and social relevance, innovative value and viability. Finally, an ad hoc scientific panel will draw up a list which will be studied by the Scientific Advisory Committee of the Foundation and submitted to the Board for consideration and approval. The decision on the distribution of the funds that have been raised will be made public in the last quarter of this year.