ESE Rare-CaPaB: ESE Educational programme on Rare Calcium, Phosphate and Bone disorders
ESE Rare-CaPaB: ESE Rare Calcium, Phosphate and Bone disorders
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About ESE Rare-CaPaB
Provides information on what rare calcium and bone disorders are, along with the ESE Rare-CaPaB aims and scope, its governance, the expert panel, who benefits from the programme and how it is supported
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Phases & Activity
Provides information about the four phases of the ESE Rare-CaPaB, and the envisaged activities and initiatives throughout the programme
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The ESE Rare Calcium, Phosphate and Bone disorders (ESE Rare-CaPaB) programme is a new expert led initiative of the European Society of Endocrinology (ESE) aimed to address the unmet needs of the calcium, phosphate and bone community. This educational programme will explore a range of calcium, phosphate and bone disorders with the following objectives:
- Identify the priorities to address concerning calcium, phosphate and bone disorders, and how to action these
- Understand and support the journey and management of patients, including in the transition from paediatric to adult care, as well as the ongoing needs of such patients throughout adulthood
- Establish ways to increase clinical awareness and diagnosis, including for the late onset forms
- Increase support and education of expert and non-expert healthcare audiences who regularly manage such patients
The ESE Rare-CaPaB programme will be developed within the period of two years, and encompass four stages (more information about the stages in the About ESE Rare-CaPaB section).
The first priority of the ESE Rare-CaPaB programme was to define a set of unmet needs concerning patients with the calcium, phosphate and bone disorders covered in the programme. This has been achieved through various activities within Phase I, including a survey answered by 407 clinicians and other healthcare professionals, as well as two virtual expert seminars and a webinar with patient advocacy group representatives.
All these initiatives helped the Working Group prioritise the key educational areas to be covered during the programme. Phase I is now complete, and we are proceeding with Phases II and III and the production of additional educational materials and outputs. Stay tuned!
A brief summary report of the ESE Rare-CaPaB educational programme with a description of the progress can be found here.
