ESE Rare-CaPaB Survey 2025

The ESE Rare Calcium Phosphate and Bone disorders (ESE Rare-CaPaB) programme is a new educational programme from the European Society of Endocrinology (ESE) aimed at addressing the unmet needs of the calcium, phosphate and bone community.

ESE is developing an independent, expert-led educational programme that explores a range of rare calcium, phosphate and bone disorders with the following objectives:
· Identify the priorities to address concerning calcium, phosphate and bone disorders, and how to act on them
· Understand and support the journey and management of patients, including 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 late-onset forms
· Increase support and education of expert and non-expert healthcare audiences who regularly manage such patients

The ESE Rare-CaPaB is focused on the following conditions:
· Hypoparathyroidism (with focus on rare causes i.e. genetic, autoimmune, other non-surgical causes)
· Inactivating PTH/PTHrP signaling disorders (iPPSD; e.g. pseudohypoparathyroidism)
· XLH and other rare causes of hypophosphatemia
· Hypophosphatasia
· Osteogenesis imperfecta
More information about the ESE Rare-CaPaB programme can be found here.

This survey has been created by an expert panel and aims to gain feedback from a wide range of clinicians and other healthcare professionals, as well as from European stakeholders regarding the key educational areas of the ESE Rare-CaPaB programme to be explored. The results from this survey will help prioritise the key educational areas to be covered during the ESE Rare-CaPaB educational programme.

This survey should take 5-10 minutes to complete, and is open to responses until 27 April 2025.

The success of this new ESE educational programme depends very much on you and we thank you in advance for your answers!
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