ESE Hypoparathyroidism Patient Forum
This project is sponsored by Ascendis Pharma and Amolyt Pharma.
The pilot project in 2021-2022 was supported by a restricted grant from Takeda.
Open access webinars for patients with hypoparathyroidism
The ESE Hypoparathyroidism Patient Forum is an educational programme that brings together clinicians and patients from across Europe to share their expertise and experience through open access webinars. They also provide an opportunity for patients to ask questions and interact with other patients.
Two webinars have taken place so far, each attended by over 150 participants representing patients, their families, and those who care for and treat people with hypoparathyroidism. Each event involved speakers from the clinician and patient community, and was translated live into three European languages. Details and recordings of each webinar can be found below.
Clinical experts
Prof. Andrea Giustina, Italy
Prof. Heide Siggelkow, Germany
Patient organisations representatives
Natalie Grosset, representative of Hypoparathyroidism France
Tanja Richter, representative of Netzwerk Hypopara, Germany
The Patient Forum Working Group serves as a consultation body to the Programme Committee
Members of the Working Group
Co-Chairs
Prof. Andrea Giustina, Italy
Natalie Grosset, representative of Hypoparathyroidism France
Clinical experts
Prof. Erik Fink Eriksen, Norway
Dr. Anna Maria Formenti, Italy
Prof. Neil Gittoes, UK
Prof. Heide Siggelkow, Germany
Patient organisations representatives
Marta Cecconi, representative of Associazione A.P.P.I., Italy
Liz Glenister, representative of Parathyroid UK
Perny-Ann Nilsen, representative of hypoPARA Norge, Norway
Peter Lakwijk, representative of Thyroid Federation International
Tanja Richter, representative of Netzwerk Hypopara, Germany
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.
