Dissemination2024-03-07T15:10:32+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.

Below are the lists of events, lay publications and press release about ERN BOND with the person in the network involved in the activity.

List of events

Rare osteochondral disorders: the ERN-BOND experience
EJP RD – ERN workshop, Rome, (IT), 13-14/10/2023
Alice Moroni

Healthcare pathway: ERNs biological samples (from individual to ecosystem) (EN)
EJP RD workshop, Madrid, (ES), 12-13/06/2023
Luca Sangiorgi

Working towards a multidisciplinary and shared approach of rare disease patients transition from paediatric to adult care management (IT)
XIII Conference A.C.A.R. Aps, Pisa (IT), 14-16/04/2023
Luca Sangiorgi

Osteogenesis Imperfecta: News in therapy (IT)
XVII Congresso OrtoMed, Florence, (IT),  15-17/11/2022
Luca Sangiorgi

Update on ERN-BOND, CHUC’s skeletal dysplasias multidisciplinary team and on clinical trials and new treatments. Mapping of portuguese teams (PT)
3rd Meeting on Rare Bone Diseases, Coimbra (PT), 7/06/2022
Sérgio Sousa

Finding and treating rare disorders in the general bone clinic (EN)
ECTS Coffee Shop, Online, 10/02/2021
Carola Zillikens

Osteogenesis Imperfecta em Diagnóstico Pré-Natal – casuística de 11 anos (PT)
Reunião Científica da APDPN, Online, 1-2/10/2021
Sérgio Sousa

European Registries for Rare Endocrine Conditions (EuRRECa): the Use of an e-Reporting Tool for Registering Calcium and Phosphate Conditions (EN)
23rd European Congress of Endocrinology – eECE 2021, Online, 22-26/05/2021
Natasha Appelman-Dijkstra, Corinna Grasemann, Gabriele Haeusler, Agnès Linglart, Ana Luisa Priego Zurita

The purpose of the Slovenian ERN HUB (EN)
European Reference Networks and the Slovenian Healthcare System, Online, 22/07/2021 

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

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