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.
Page content under update!
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
ERN-BOND, the last five years and the future (SP/EN)
Coordinator Karen Heath (organiser), Luca Sangiorgi
5th Annual meeting of clinical and molecular diagnosis of skeletal dysplasias: from research to clinical practice
20/04/2022 Hybrid
2021
Finding and treating rare disorders in the general bone clinic (EN)
Carola Zillikens
ECTS Coffee Shop
10/02/2021 Online
Displasias ósseas (PT)
Sérgio Sousa
49º Congresso Português de Neonatologia
8-9/04/2021 Online
Osteogenesis Imperfecta em Diagnóstico Pré-Natal – casuística de 11 anos (PT)
Sérgio Sousa
Reunião Científica da APDPN
1-2/10/2021 Online
Successful Treatment of Achondroplasia in Children (EN)
Klaus Mohnike
10th Annual Pediatric Endocrinology Symposium
30/04/2021 Online
European Registries for Rare Endocrine Conditions (EuRRECa): the Use of an e-Reporting Tool for Registering Calcium and Phosphate Conditions (EN)
Natasha Appelman-Dijkstra, Corinna Grasemann, Gabriele Haeusler, Agnès Linglart, Ana Luisa Priego Zurita
23rd European Congress of Endocrinology – eECE 2021
22-26/05/2021 Online
Leaving the darkness: Tackling rare bone diseases (EN)
Luca Sangiorgi, Ines Alves
Leaving the darkness: Tackling rare bone diseases
22/09/2021 Online
The purpose of the Slovenian ERN HUB (EN)
European Reference Networks and the Slovenian Healthcare System
22/07/2021 Online
‘Bone Curriculum’ Symposium & ‘Pre-Symposium on Rare Bone Diseases’ (endorsed by ERN BOND) (EN)
Hans-Georg Zmierczak
‘Bone Curriculum’ Symposium & ‘Pre-Symposium on Rare Bone Diseases’ (endorsed by ERN BOND)
21-22/10/2021 Online
Evolving Achondroplasia Care: Relationship Between Height and Quality of Life (EN)
Ines Alves
Evolving Achondroplasia Care: Relationship Between Height and Quality of Life
13/10/2021 Online
Role of biobanks in European Reference Networks (EN)
Luca Sangiorgi
Rare Disease Biobanks: Roles in Research Networks and International Collaborations
10-11/05/2021 Online
ERN BOND updates (EN)
Lars Sävendah
ESPE RDAG Web Conference
05/11/2021 Online
ECTS Webinar Series Rare Bone Diseases: Osteogenesis Imperfecta (PT)
Oliver Semler
ECTS Webinar Series Rare Bone Diseases: Osteogenesis Imperfecta
10/11/2021 Online
The European Reference Network for Rare Bone Disorders – ERN BOND (PT/EN)
Luca Sangiorgi, Ines Alves
1st ANDO Congress, Leiria
11/09/2021 Hybrid
Pathophysiology and treatment of Autosomal Recessive Osteopetrosis: past, present and future (EN)
Anna Villa
ECTS & ECTS Academy webinars
04/05/2021 Online
Addressing delays in the diagnosis and referral of achondroplasia (EN)
European achondroplasia forum
11/05/2021 Online
“Behandelbare Wachstumsstörungen” (DE)
Klaus Mohnike
Medikamentöse Therapieoptionen bei Kleinwuchs
22/01/2021 Online
Lay publications and Press release
2022
Leaving the darkness: Tackling rare bone diseases (EN)
Natasha Appelman-Dijkstra and Inês Alves
2021
Fostering research in rare bone conditions (EN)
Rare revolution digital magazine – Inês Alves