Dissemination2023-03-02T18:09:03+01:00

ERN BOND knowledge spread in Events

The dissemination of activities and outcomes achieved by the ERNs is a cornerstone to ensure a wide impact among the rare disease community, including health professionals, patients and other stakeholders.
BOND dissemination actions mainly result in the organization and/or attendance as speakers of rare disease events or in the publication of lay articles for increasing awareness of ERNs in the rare disease community and the general public as well.

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List of events

2023

ERN BOND: the importance of a Reference Network for RARE Diseases of the Musculoskeletal System
Maria Beatrice Michelis
Congress SIOT 106TH – Congress of the Italian Society of Orthopaedics and Traumatology – Roma, Italy 9th – 11th November 2023.

 

ERN BOND: the future of assistance in European integration
Luca Sangiorgi
Congress on “Hot topics: paediatric bone diseases” organized by the Rare Bone Metabolism Center – AOU Policlinico Umberto 1 – Roma, Italy on September 15th – 16th, 2023.

 

ERN and national health system:how to integrate them?
Luca Sangiorgi
Educational course Rare and complex diseases in rheumatology, by Italian Society of Rheumatology.
02/03/2023 in person

2022

2021

The purpose of the Slovenian ERN HUB (EN)

European Reference Networks and the Slovenian Healthcare System
22/07/2021 Online

ERN BOND updates (EN)
Lars Sävendah
ESPE RDAG Web Conference
05/11/2021 Online

Addressing delays in the diagnosis and referral of achondroplasia (EN)

European achondroplasia forum
11/05/2021 Online

Lay publications and Press release

2022

2021

2020

2017

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