Dissemination2025-01-29T20:59:25+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

Fully-instrumented gait analysis (FGA) in rare bone diseases – a scoping review of the literature
Norwegian orthopaedic Society, Oslo, (NO), 23-25/10/2024
Joachim Horn

Osteogenesis imperfecta: between real data and life experiences
Media Tutorial, Milan (IT), 10/10/2024
Luca Sangiorgi

ERN BOND overview
Data science and digital innovation meeting (Alexion – Astrazeneca), Milan (IT), 11/09/2024
Luca Sangiorgi

The value of ERN BOND, the European Reference Network for rare bone disease patients
XIV Convegno A.C.A.R. Aps, Bologna (IT), 13/04/2024
Liana la Forgia, Luca Sangiorgi

Management of patients with Multiple Osteochondromas, Ollier Disease and Maffucci Syndrome explained through the experience of a number of different Italian hospitals
XIV Convegno A.C.A.R. Aps, Bologna (IT), 13/04/2024
Maria Beatrice Michelis,

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

The rare disease network in europe and the importance of biobanks
Convegno AISP – Emozioni Rare,  Montecatini Terme (IT), 22/10/2022
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

La real world evidence nell’osteogenesi imperfetta, progetto SATURN (IT)
PharmaStarTV
Luca sangiorgi

L’impegno nelle reti europee per le malattie rare
Mondosanità
Maria Beatrice Michelis

Malattie rare, a Padova un confronto sulle reti europee ERN
Il sole 24 ore
Luca Sangiorgi

L’integrazione degli ERN nei sistemi Sanitari Nazionali (IT)
Magazine Mondosanità – Luca Sangiorgi

ernbond

ERN-BOND is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are Funded by the European Commission. For more information about the ERNs and the EU health strategy, please visit ec.europa.eu/health/ern

ernsFunded by the European Union
ERN BOND Specific Grant Agreement no. 101157116

regione emilia romagna

Coordinating Center
Istituto Ortopedico Rizzoli
via G.C.Pupilli, 1 – 40136 Bologna – Italy

euThe contents of this website represents the views of the network and
is its sole responsibility; and do not necessarily reflect the opinion of the European Union

erns
Co-funded by the European Union
ERN BOND Specific Grant Agreement no. 101157116

regione emilia romagna

Coordinating Center
Istituto Ortopedico Rizzoli
via G.C.Pupilli, 1 – 40136 Bologna – Italy

The contents of this website represents the views of the network and is its sole responsibility; and do not necessarily reflect the opinion of the European Union

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