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

See a video of Rare Disease Day events in Italy

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]


National Alliances


National Alliance
Flaminia Serra


RARE RUN BOLOGNA – Virtual Edition

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

IP.ASSI avanti nella RICERCA…contro la pandemia

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

IV Edizione “Rare Abilità”

IV edizone di “Rare Abilità”, adesione alla campagna Nazionale con l’ illuminazione di Palazzo di Città (Fasano -BR) e momenti… Continue reading IV Edizione “Rare Abilità”

Montecatini Terme, Montale, Agliana, San Marcello Piteglio, Serravalle Pistoiese, Uzzano, Monsummano Terme, Ponte Buggianese, Miggiano, Francavilla Fontana, Martina Franca, Taranto, San Donaci, Bergamo, Legnano, L'Aquila, Torino

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

Malattie rare e Covid-19: un bilancio dopo un anno di pandemia

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

Accendiamo le luci sulle malattie rare
San Donà di Piave (VE)

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

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