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With over 75 million euros collected from donors, the Telethon Foundation closes 2022 with a new record and with further growth in investments in the most advanced scientific research which reach 51 million euros, with an increase of 7% compared to the year previous.
It was a 2022 of turning point and change that the Foundation has just closed, not only for the record numbers, but also for the ever-increasing commitment to guaranteeing a cure for rare genetic diseases at all costs, with the announcement of wanting take over as marketing authorization holder for the gene therapy of Ada-Scid, the first approved in the world entirely developed in Italy by the San Raffaele-Telethon Institute for Gene Therapy (SR-Tiget) in Milan. Brought to the market in 2016 thanks to a public-private agreement with GlaxoSmithKline (Gsk) it was then sold in 2018 to Orchard Therapeutics (Otl), which in 2022 however decided to abandon, despite the excellent clinical results achieved.
But 2022 was also the year for Telethon of the first, innovative, National Collective Labor Agreement, signed with the Cisl, which goes beyond the precarious and atypical contracts of the sector and restores dignity to a strategic employment for the health of citizens.
In line with the new Guidelines for drafting the social report of third sector entities (as well as the international standard for sustainability reporting Global Reporting Initiative), the Telethon Foundation has also launched the process of reviewing internal reporting processes, with the objective of strengthening transparency and autonomy, values that have always been in the Foundation’s DNA, in sharing the activities carried out, the results achieved in supporting scientific research and the progress of the strategic plan.
The 2022 Social Report was in fact also a further opportunity for discussion, participation, listening and dialogue, to assess the degree of alignment between the strategic development plan and the expectations of the various categories of relevant stakeholders.