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 third episode of Alexion’s Rare Conversations event series, in cooperation with BPI, will be a forum to discuss specificities and needs of research in rare diseases. Indeed, research and development of new treatments in rare and ultra-rare diseases faces its own challenges, due to missing knowledge of the disease, small patient population, difficulties to conduct clinical trials and needs for high investments.

This exchange of views will allow to get a full picture on needs and specificities in rare disease research, therefore defining the necessary steps to undertake to reach further success in this area for the benefit of rare disease patients. Alexion will offer a keynote speech, to present its commitment to research in rare diseases. This will be followed by a panel discussion to understand and share specificities from different stakeholders’ perspective: research institutions, patients, clinicians. The panellists will be able to articulate on their direct experience and outline their view regarding challenges and opportunities in rare disease research. The panel will be followed by a Q&A session with the audience. The event will be wrapped up by BPI.

Inês Alves will be speaking at this event, on behalf of ERBF.

To attend this webinar use this Registration link: https://lnkd.in/dQ7G7vT

Visit our Events Page and find out more about the European Rare Bone Forum

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