ERN BOND members yearly contribute to the Rare Disease Day campaign for raising awareness and generating change for people worldwide living with a rare disease, their families and carers.
Germany
Rare Disease Day at UKE 2026 – Patient Information Day
25 February 2026, Hamburg (Germany), Ralf Oheim
Italy
RareMenti 2026: Rare Disease Day in Sorrento
28 February 2026, Sorrento (Italy), Manila Boarini
Growing together. Stories of care, bonds and courage
27 February, Verona (Italy),
Final conference for Rare Disease Day: #uniamoleforze
26 February 2026, Rome (Italy), Luca Sangiorgi, Marco Sessa
Rare Diseases: Integrating Pathways, Connecting Care
26 February 2026, Florence (Italy), Pasquale Comberiati
Rare Disease Day 2026: Complementary Therapies in Care Pathways for Rare Skeletal Diseases
13 February 2026, Bologna (Italy), Luca Sangiorgi
UNIAMO Rare Disease Day 2026 – Marche Regional Conference
2 February 2026, Ancora (Italy), Luca Sangiorgi
Luxembourg
Journée Internationale MALADIES RARES : L’expertise du CHL au service des patients
28 February 2026, Luxembourg City (Luxembourg )
Germany
Online Information Event on Musculoskeletal Rare Diseases
26 February 2025, , Hamburg (Germany), Ralf Oheim
Italy
#UNIAMOLEFORZE – Bologna
1 March 2025, Bologna (Italy), Luca Sangiorgi
Rare disease day
6 -8 February 2025, Naples (Italy), Silvia Fittipaldi
The role of ERNs in research
30 January 2025, Rome (IT), Luca Sangiorgi
Spain
The Multidisciplinary Workshop on Rare Diseases Save
24 February 2025, Madrid (Spain), Karen Heath
Italy
Accesso, integrazione e transizione per sostenere i malati rari
28 February 2024, Firenze, (Italy) – Luca Sangiorgi
“A TUTTO ERN” event dedicated to medical and health students (Italian)
21 February 2024, Padova, (Italy) – Luca Sangiorgi
#UNIAMOLEFORZE – RARE DISEASE DAY – Una presa in carico più equa ed olistica per la persona con malattia rara – CITTA’ DI BOLOGNA (Italian)
12th February 2024, Bologna, (Italy) – Luca Sangiorgi
Germany
#wiedu by LOUDRARE” (German)
The #wiedu campaign (wie du = like you) aims to raise awareness in the general public for rare diseases and above all, show them: we are just like you. Posters will be shown at train stations in 8 German big cities in the last week of February with a grand finale on the Rare Disease Day.
Last week of February 2023 – Nadine Großmann
Italy
Hybrid event #UNIAMOLEFORZE – RARE DISEASE DAY – CITTA’ DI GENOVA (Italian)
17 February 2023, Genova, (Italy) – Maria Beatrice Michelis
Conference “Una presa in carico più equa ed olistica per la persona con malattia rara, il Tavolo della Rete Metropolitana delle Malattie Rare un anno dopo” (Italian)
21 February 2023, 17:00 CET – Bologna (Italy) – Luca Sangiorgi
Hybrid event “MALATTIE RARE – Stati generali Nord-Est” (Italian)
23 – 24 February 2023, Padova (Italy)
Italy
Webinar series about COVID-19 and rare bone diseases. Organised in collaboration with As.It.O.I., A.C.A.R. and UNIAMO FIMR and endorsed by Fondazione Telethon, BBMRI.it and Istituto Superiore di Sanità, (the Italian health institute).
COVID-19 and indications for patients with Osteogenesis Imperfecta, (Italian)
21 Janaury 2021, Speakers: Dr. Andrea Vianello, Dr. Luca Sangiorgi
Covid-19 and vaccines (Italian with English subtitles)
28 January 2021, Speakers: Prof. Ivan Gentile, Dr. Luca Sangiorgi
Covid-19 and psychological impact (Italian with English subtitles)
22 February 2021, Speakers: Dr. Marianna Matera, Dr. Manila Boarini
Tools for remotely following up patients with rare skeletal diseases (Italian)
4 March 2021, Speakers: Prof. Gianluca Moro, Dr. Luca Sangiorgi, Dr. Paolo Fraschini
Giornata malattie rare: Rizzoli punto di riferimento per quelle scheletriche (Italian)
3 March 2021, Interview with Luca Sangiorgi for Rare Disease Day 2021
Italy
Webinar series about COVID-19 and rare bone diseases. Organised in collaboration with As.It.O.I., A.C.A.R. and UNIAMO FIMR and endorsed by Fondazione Telethon, BBMRI.it and Istituto Superiore di Sanità, (the Italian health institute).
COVID-19 and indications for patients with Osteogenesis Imperfecta, (Italian)
21 Janaury 2021, Speakers: Dr. Andrea Vianello, Dr. Luca Sangiorgi
Covid-19 and vaccines (Italian with English subtitles)
28 January 2021, Speakers: Prof. Ivan Gentile, Dr. Luca Sangiorgi
Covid-19 and psychological impact (Italian with English subtitles)
22 February 2021, Speakers: Dr. Marianna Matera, Dr. Manila Boarini
Tools for remotely following up patients with rare skeletal diseases (Italian)
4 March 2021, Speakers: Prof. Gianluca Moro, Dr. Luca Sangiorgi, Dr. Paolo Fraschini
Giornata malattie rare: Rizzoli punto di riferimento per quelle scheletriche (Italian)
3 March 2021, Interview with Luca Sangiorgi for Rare Disease Day 2021
Europe
Presentation of the ERN BOND White Paper on Diagnosis at the event European Reference Networks – Accelerating and Improving Diagnosis for Rare Diseases Patients (English)
28 February 2018, Bruxelles (Belgium) – Luca Sangiorgi
Funded by the European Union
“Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA. Neither the European Union nor the granting authority can be held responsible for them.”
