Work Packages

All the activities are carried out within 8 Work Packages.
Each WP has leaders in charge to manage and coordinate the scientific activities. Patient representatives are present in each WP and work together with the experts.

Coordination focuses on the general management and support of the whole network, providing leadership, organisational capacity and logistical support to all BOND members, and in particular to the WPs.

WP1 leader is Luca Sangiorgi
WP1 ePAG advocate is Marco Sessa

WP2 has the key scope to raise awareness on ERNs and rare diseases among the scientific community, patients and the general public, to facilitate networking and communication, and to engage with all interested stakeholders.

It focuses on the management and organisation of all dissemination activities of the BOND network by continuous update of the ERN BOND website, delivery of news and newsletters and material preparation for the specific dissemination products including the promotion of the publication of scientific outcomes.

WP2 also coordinates the communication strategy across social media channels and the website and in synergy with other entities/organisations related to Rare Bone Disorders.

WP2 leader is Luca Sangiorgi
WP2 ePAG advocates are Inês Alves and Tenna Toft Olesen 

The main objective of WP3 is to monitor the network and HCPs performances based on defined criteria.

WP3 leader is Luca Sangiorgi
WP1 ePAG advocate is Inês Alves

WP4 will dedicate to improving healthcare at all stages of life in patients with RBDs, all revolving around the use of CPMS by continuing to develop multidisciplinary expert groups within ERN BOND which provide their input to the discussion of complex cases using CPMS.
WP4 will contribute to improve healthcare and gather knowledge on ultrarare bone disorders, which are often undiagnosed or misdiagnosed for many years, making it difficult for affected individuals to receive appropriate management and support.
WP4 will also concentrate on improving genetic testing in RBDs by reporting what is required in genetic testing of RBDs, to document the common errors and pitfalls observed by the participating HCPs, so as to improve genetic testing in RBDs and subsequently patient healthcare.
WP4 has also two focus groups which evaluate and discuss i) prenatal cases with suspicion of foetal dysplasia; ii) preconception, pregnancy and postpartum management of women with a RBD.

WP4 leaders are Karen E. Heath, Valérie Cormier-Daire and Sérgio B. Sousa
WP4 ePAG advocates are Inês Alves, Nadine Grossman and Susana Noval Iruretagoyena

WP5 leads the general operational management and activities of EuRR-Bone, the European Registries for Rare Bone and Mineral Conditions

WP5 leader is Natasha Appelman-Dijkstra
WP5 ePAG advocates are Claudia Finis, Inês Alves, Rebecca Tvedt Skarberg and Tenna Toft Olesen

WP6, in line with the network’s main objective, aims to promote, facilitate, develop and improve education and training of health care professionals and all stakeholders in the care of patients with Rare Bone and Mineral Disorders, to ensure the highest level, quality and innovation of health care in this field.
WP6 activities include the delivery of education and training products, such as webinars and thematic meetings.
WP6 in the next period will continue to promote the improvement and expansion of current Education and Training activities, and will lay the groundwork for the development of a comprehensive Education and Training Programme for Rare Bone and Mineral Disorders
in collaboration with ePAGs and local Patients Associations.

WP6 leader is Luca Sangiorgi
WP6 ePAG advocates are Claudia Finis, Inês Alves, Liana La Forgia, Nadine Grossman and Rebecca Tvedt Skarberg

WP7 is dedicated to review and collect current knowledge in terms of Clinical Practice Guidelines , the use of clinical decision tools, in treatment and follow up of patients with RBDs, and to collect data on functional limitations and long-term musculo-skeletal morbidity in adults with RBDs.

WP7 continues the Gait analysis project started in 2022 which include a scoping review about the use of gait analysis in RBDs

WP7 leaders are Lena Lande Wekre and Joachim Horn
WP7 ePAG advocates are Claudia Finis, Inês Alves,Liana La Forgia, Rebecca Tvedt Skarberg and Tenna Toft Olesen

This WP concentrates on cooperation activities and support to Ukrainian competent authorities and healthcare units, contributing to capacity building and best practice sharing with Ukraine. Activities for establishing links between the national health system of Ukraine and the ERNs, and ERN BOND specifically, are in progress.
WP8 will create a website section for Ukrainian stakeholders as a hub for them where finding information, contacts and links on RBDs and ERN BOND activities and delivery delivery of dissemination material in Ukrainian language to be disseminated among Ukrainian competent authorities and healthcare units, and local patient organisations as well.

WP8 leader is Luca Sangiorgi
WP8 ePAG advocates are Claudio Pirola and Marco Sessa