ESE Hypoparathyroidism Patient Forum
This project is supported by restricted grants from Ascendis Pharma and Amolyt Pharma.
The pilot project in 2021-2022 was supported by a restricted grant from Takeda.
ESE Hypoparathyroidism Patient Forum is an educational programme of open access webinars for patients with hypoparathyroidism. The webinars bring together clinicians and patients from across Europe to share their expertise and experience. They also provide an opportunity for patients to ask questions and interact with other patients.
Registration is now open for Hypoparathyroidism Patient Forum 2023 which will take place on 28 October 2023.
The first Hypoparathyroidism Patient Forum 2022 was organised in March 2022 and attended by over 175 participants, representing patients, their families, and those who care for and treat people with hypoparathyroidism. The webinar involved 10 speakers from the clinician and patient community, and was translated live into three languages. The video recordings from the meeting are available here, including translations into French, Spanish and Italian.
For the latest ESE patient information materials on hypoparathyroidism, we recommend to visit the webpage of PARAT - An ESE Educational programme on Parathyroid Disorders, which includes a patient leaflet issued in February 2022.
Background
In 2021 ESE embarked on a pilot project to create a Hypoparathyroidism Patient Forum, bringing together clinical experts and patient organisations’ representatives from across Europe to understand and identify the needs of patients with hypoparathyroidism. The objective of the forum was to partner with the patient community, provide them with a platform to voice issues they are facing and identify specific initiatives, which will support a pan-European approach to the management, treatment and general care of people with hypoparathyroidism.
The direction of the Forum’s programme of work was led by a Working Group, which comprised five clinicians and six representatives of patient organisations. The Working Group identified education about hypoparathyroidism, for both healthcare professionals and patients, as a crucial need that ESE should support.
ESE has been providing education for clinicians in the area of hypoparathyroidism via PARAT - An ESE Educational programme on Parathyroid Disorders, an ambitious four-year programme to develop further consensus recommendations and strategies that would promote best clinical practice around parathyroid disorders.
In order to address the need for patient education and exchange of information between patients and clinicians, the Working Group elected a Programme Committee from its members and organised a key initiative of the project – an open access webinar ‘1st ESE Hypoparathyroidism Patient Forum’.
The meeting received overwhelmingly positive feedback from the participants, who expressed hopes for it to be repeated. The recordings of the sessions in four languages (English, French, Spanish and Italian) are available on the ESE website, providing comprehensive educational materials for patients and clinicians alike.
Building on the Hypoparathyroidism Patient Forum pilot project and following the recommendations of its Working Group, ESE is working with patient representatives and clinical experts to continue the educational webinars for hypopara patients.