The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) was created by Experts on rare bone and mineral conditions and patient representatives in 2020. This project works closely with the European Registry for Rare Endocrine Conditions (EURRECa) and the European Reference Networks for Rare Bone and Rare Endocrine Conditions and includes:

• An e-reporting program (e-REC) that captures new clinical encounters
• A centralised Core registry
• Disease-specific modules on Achondroplasia, Fibrous Dysplasia/McCune Albright syndrome, Osteogenesis Imperfecta and Rare Hypophosphatemia.

EuRR-Bone and EuRRECa are surveying patients and clinicians to better understand the needs of the bone and endocrine community regarding Patient Reported Outcome Measures (PROMs). PROMs are used in clinical practice to obtain reports from patients about their health and well-being.

The survey is available until January 31 and results will help decide which generic PROMs to add to the clinician and patient registry platform.

Choose what suits you and Take the EuRR-Bone PROMs survey

Visit the European Rare Bone Forum (ERBF) for more news and information on Rare Bone Conditions here

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The Rare Bone Disease Summit 2021 (December 6 and 14) is the first edition of a global multi-stakeholder group meeting that aims to provide a platform to enable contributors working in the rare bone disease field (patient organisations, experts, pharmaceutical industry, and scientific and medical societies) to collaborate towards improving the lives of people living with these conditions.

The European Rare Bone Forum (ERBF) will take part in this initiative and is also represented in the The Rare Bone Disease Summit 2021 Steering Committee.

Visit the Summit’s website here.

Meeting Objectives

• Provide a platform to build a robust and valuable annual program to enable stakeholders working in the area of rare bone disease to collaborate towards improving the lives of patients living with RBDs
• Discuss the patient experience and the impact of RBDs on patients and caregivers
• Highlight the bottlenecks in the patient journey (diagnosis, care pathways) and advance knowledge, awareness and communication about RBDs
• Facilitate dialogue between stakeholders to exchange ideas that drive tangible outputs and provide a synergistic action plan for 2022 and beyond.

Agenda

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The Call to Action project is a ERBF initiative that aims to analyse the current RBD research landscape, identify unmet needs in RBD and their societal impact, identify current gaps or barriers that are hindering R&D processes, and propose solutions to address these.

Phase 1 of the will focus on collecting evidence to provide valuable insights into RBD research including the identification of key opinion leaders (KOLs) and top research institutes, key unmet needs and their societal impact, gaps or barriers hindering R&D progress, and potential solutions to address key challenges. Findings from this project will feed into Phase 2 of the ‘call to action’ which aims to influence policies at the national and European level.

Find out more about the European Rare Bone Forum Call to Action here.

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The latest edition of this magazine has Ipsen serving as the editorial sponsor and focuses on Rare Bone Disorders. We are happy to share this issue where the European Rare Bone Forum (ERBF) is featured in an interview with one of our founders, Inês Alves (patient expert and ePAG for the ERN BOND, and also founder of Beyond Achondroplasia and ANDO Portugal).

Read the full interview:

For the full issue of the RARE BONE edition of RARE Revolution Magazine click here.

To learn more about the ERBF work, closing the gap between researchers, pharmaceutical companies and patient organisations, visit our website.

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This event has the support of the European Calcified Tissue Society (ECTS).

The post Paving new roads in Rare Bone Conditions Research appeared first on European Rare Bone Forum.