The beginning of February 2020, when Italian RD Community was already ready to celebrate the RDD with hundreds of events, brought in Italy the nCo V ( CoronaVirus) outbreak. This new and daily evolving situation have forced us to change our program and those of Patient Organisations and many events have been or are being cancelled. Undoubtedly priorities have changed and the citizens’ health and the vulnerability of people living with Rare Diseases come first.
Nonetheless, the community of rare patients does not give up and where possible, in line with national, regional and provincial directives, the planned events will take place. In addition, to illuminate these slightly less bright days especially for some of us, various monuments in several cities in Italy will light up with the colors of the RDD logo: Colosseum, Pisa leaning Tower and the Fountain in Piazza De Ferraris in Genoa
Social media will be the unstoppable means by which the awareness campaign on Rare Diseases will spread to all regions and outside our borders. Thus we invite everyone, people with rare disease, their families and carers, friends, medical health workers, health professionals- to whom we convey our gratitude for what they are doing to counter this outbreak-, national and regional authorities as well as researchers to upload your photos, using the hashtags #RareDiseaseDay #GiornatadelleMalattieRare #Showyoursupport
Maybe the photos will be a little different from those of previous years but it will show that we will not let ourselves be beaten down. Follow the updates on this page and on the UNIAMO FIMR website
Italy joined Rare Disease Day for the first edition in 2008. In 2017, over 170 celebrations spread out over 50 different towns and cities with highlights including a dance display in Milan, a workshop in Rome, a conference in Siena and a charity run in Ostuni.
In 2019, there was also a huge variety of events across Italy to celebrate the day. People also got involved in flash mobs across Italy. Food unsurprisingly played a role in the day with a group of chefs coming together to produce dishes made from rare ingredients in recognition of Rare Disease Day. Other entertainment to celebrate Rare Disease Day included a film showing, a jazz event and a photo, comic and illustration contest. The ‘Uno Sguardo Raro’ international film festival on rare diseases took place with over 500 works from 72 countries! There were also conferences and lectures on this years theme and new research in the field of rare disease treatment.
Do you know of any events not listed here? Or would you like to get involved? Email us at [email protected]
As we cannot meet for our traditional RARE RUN BOLOGNA we orginized a Special Edition: the VIRTUAL RARE RUN BOLOGNA… Continue reading RARE RUN BOLOGNA – Virtual Edition
Thanks to UILDM’s branch of Martina Franca and to the positive answer of the local authorities, three monuments will be enlighted… Continue reading UILDM ACCENDE LE LUCI SULLE MALATTIE RARE ANCHE A BRINDISI
Nuove ricerche sull’Incontinentia pigmenti ai tempi del COVID-19 In occasione della Giornata Mondiale Malattie rare, l’Associazione Italiana Incontinentia pigmenti… Continue reading IP.ASSI avanti nella RICERCA…contro la pandemia
La Fontana monumentale di Piazza A. Moro di Bari il giorno 28 febbraio 2021 sarà illuminata di verde per celebrare… Continue reading Accendiamo le luci sulle Malattie Rare – La fontana monumentale della Piazza A. Moro di Bari
Thanks to the work of UILDM branches (UILDM – Unione Italiana Lotta alla Distrofia Muscolare) we will have 19 monuments… Continue reading UILDM ACCENDE LE LUCI SULLE MALATTIE RARE
The CMID, Coordination Center of the Interregional Network for Rare Diseases of Piedmont and Valle D’Aosta, organizes in collaboration with… Continue reading Malattie rare e Covid-19: un bilancio dopo un anno di pandemia
Il 28 Febbraio 2021 il Comune di San Donà di Piave (VE) illuminerà il Municipio in Piazza Indipendenza con i… Continue reading Accendiamo le luci sulle malattie rare