Saturday 15 November 2025
10:00 - 13:00 (CET)
Online via Zoom
Register to attend for free.
The ESE Hypoparathyroidism Patient Forum webinar is free to attend. Please register by clicking the link below.
Register Now
Please note: ESE does not permit attendance of sanctioned individuals or individuals from sanctioned institutions at any ESE events. Please click here to see ESE's Sanctions Policy
Programme*
10:00 - 10:10
Welcome and introduction
Prof. Andrea Giustina (Italy) & Tanja Richter (Germany)
10:10 - 11:20
Session 1: Social Impact of Hypoparathyroidism
Chairs: Prof. Andrea Giustina (Italy) & Prof. Alberto Pereira – ENDO-ERN (The Netherlands)
How to make the rare disease patient voice heard in Health Technology Assessment
François Houÿez, EURORDIS Rare Diseases Europe (France)
Scientific data on quality of life and hypoparathyroidism social impact
Prof. Heide Siggelkow (Germany)
Patient journey
Natalie Grosset (France)
Panel discussion
11:20 - 11:35
Break
11:35 - 12:30
Session 2: Revised ESE Guidelines on Hypoparathyroidism
Chairs: Teodor Dumitrescu (Romania) & Dr. Elizabeth (Liesbeth) Winter (The Netherlands)
Revised ESE Guidelines on Hypoparathyroidism
Prof. Jens Bollerslev (Norway)
Patient view on Revised ESE Guidelines on Hypoparathyroidism
Lucy Weigall (UK)
Q&A
12:30 - 13:00
Open Q&A and session close
This educational webinar has a dedicated Questions & Answers time, in which the panellists will aim to discuss questions from the audience.
Please note:
- We are not able to give medical advice or answer questions related to particular circumstances of a patient. Please contact your doctor if you require medical advice.
- We may not be able to answer all questions, but we will endeavour to cover the common interests.
*may be subject to change
This event will be held in English. Simultaneous translations into French, German and Romanian will be available.
Please note: The live webinar can only support 1000 delegates.
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
Prof. Dr. Heide Siggelkow MD PhD
Heide Siggelkow works as the medical director and endocrinologist in an outpatient clinic for endocrine or metabolic bone diseases including osteoporosis, hypoparathyroidism, hyperparathyroidism and rare bone diseases. Between 2011 and 2015, she was head of the Association of German Language Societies in the special Field of Osteology (DVO). In this position, she initiated and supported the development of the Osteologic Research Centers DVO. She has been president of the German Society of Osteology (DGO) from 2017–2019. In 2017, the Intensive Course for Clinical Endocrinology of the German Society of Endocrinology (DGE) took place in Göttingen under her leadership, and in 2019 she hosted the yearly German Congress of Endocrinology in Göttingen. From 2018-2022 she has been cofounder and spokesperson of the German network of rare bone diseases, “Netzwerk für seltene Osteopathien NetsOs”. 2017-2020 she was member of the European Calcified Tissue Society (ECTS) Website and Social Media Action Group, since 2021 she joined the ECTS Action group of Rare Bone Diseases and is member of the ECTS Board since 2022. 2020-2024 she was member of the ESE Education committee and representative in the PARAT programme of the European Society of Endocrinology (ESE). She is now Expert Panel member of the ESE Educational Programme on Rare Calcium, Phosphate and Bone Disorders (RCPBD). Her basic scientific work at the University of Göttingen Medical Center focuses on molecular and metabolic mechanisms important for the interplay between fat and bone in primary and secondary forms of osteoporosis, with a special focus on cortisol and bone. Another main topic is the investigation of mechanisms of osteoporosis in mastocytosis. Her clinical research is now concentrated on secondary forms of osteoporosis and on hypoparathyroidism with a special focus on quality of life.
Jens Bollerslev
Professor emeritus of Endocrinology at the University of Oslo, Norway. He was member of the Executive Board, the European Society of Endocrinology (ESE), 2013-7, chair of the ESE Education Committee, 2014-7, and chair of the ESE committee for Post Graduate Courses, 2015-9. Presently he co-chairs the ESE PARAT project and just completed the co-chair-role of the revision of ESE Clinical Guideline on Management of chronic hypoparathyroidism in adults (2023-25). His special interest is within clinical and translational endocrinology, and in classical endocrine diseases, such as Acromegaly and Cushing’s, often studying bone as target tissues for clinical activity. A major interest has been devoted to metabolic bone disorders, other than postmenopausal osteoporosis, as illustrated by his work for The Scandinavian Investigation of Primary Hyperparathyroidism. He has a deep interest in the control of bone remodeling as seen in classical endocrine and inherited metabolic diseases, and also in relation to solid organ transplantation. As such, he has published more than 350 papers in international, peer-reviewed journals.
François Houyez
François started his journey as patient advocate back in 1989, when he joined Act Up Paris and treatment advocacy movement for HIV/AIDS. He joined Eurordis in 2003, where he is Director of Treatment Information and Access. He represents Eurordis at the EMA and at the EU HTA Stakeholder Network. He is also Secretary of the get Real institute. (https://www.eucapa.eu/).
Natalie Grosset
Natalie co-founded the French hypoparathyroidism patient organization in 2015 after recognizing the scarcity of information about the condition available in French. She served as president and later as co-president until 2022, and has been honorary president ever since. She believes this condition is frequently underestimated and misunderstood—often perceived simply as the absence or malfunction of internal body parts. While its effects may not be visible externally, the impact on internal bodily functions creates immense, unseen struggles for those affected. She accepted to share with us today her hypopara journey with the hope to create better awareness on this condition.
This educational webinar has a dedicated Questions & Answers time, in which the panellists will aim to discuss questions from the audience.
Please note:
- We are not able to give medical advice or answer questions related to particular circumstances of a patient. Please contact your doctor if you require medical advice.
- We may not be able to answer all questions, but we will endeavour to cover the common interests.
- You will also be able to ask questions live during the webinar.
This event is kindly sponsored by:
30/07/2024
Patients , Clinicians , Nurses , Researchers , Public , ESE Events , Patient Forums , Thyroid , Patients , Clinicians ,