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.

Rare disease day 2024

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

Rare disease day 2023

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)

Rare disease day 2022

Italy

Conference “Una presa in carico più equa ed olistica per la persona con malattia rara, Le reti in sanità: le forme dell’integrazione” (Italian)
25 February 2022, Bologna (Italy) – Luca Sangiorgi

Norway

Rare Disease Day conference (Norwegian)
28 February 2022 – Rebecca Tvedt Skarberg

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

Rare disease day 2018

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