1st ESE Hypoparathyroidism Patient Forum

The first ESE Hypoparathyroidism Patient Forum was held on 26 March 2022.

With over 175 participants, representing patients, their families, and those who care and treat people with hypopara, participants heard from a line-up of both clinical and patient experts discussing the management and treatment of hypopara.

The forum identified that hypopara patients still face significant challenges in living with the condition every day. Often challenges arise for people with hypopara in accessing a specialist who understands their condition, and therefore subsequently accessing the appropriate treatment of their condition. Hypopara can have a significant impact on the quality of life of those who live with the condition, from being able to undertake day-to-day tasks to more severe complications which can result in hospitalisation. Treatment options were discussed, from the standard management with calcium, magnesium and vitamin D supplements, to hormone replacement therapies currently available in selected countries.  

The meeting provided an opportunity for those with hypopara to share experiences and also for clinicians to listen to the challenges that people with hypopara face every day.

The English recording of the sessions can be watched below.
Other language versions are available here: FrenchItalianSpanish.

Sessions and recordings

Welcome and introduction
Prof. Andrea Giustina, Italy

 


Session 1: Hypoparathyrodism symptoms
Speakers:
Prof. Peter Kamenicky, France
Natalie Grosset, France
Tanja Richter, Germany
Chairs:
Prof. Andrea Giustina, Italy
Liz Glenister, UK

 

Session 2: Current standards of hypoparathyroidism care – practical problems and limitations in everyday management
Speakers:
Prof. Heide Siggelkow, Germany
Liz Glenister, UK
Chairs:
Prof. Erik Fink Eriksen, Norway
Helen Dahl-Hansen, Norway

 

Session 3 with a dedicated Q&A: Hormone replacement therapy in hypoparathyroidism – new developments and future prospects
Speakers:
Prof. Erik Fink Eriksen, Norway
Ray Finlay, UK
Barbara, Germany
Natalie Grosset, France
Helen Dahl-Hansen, Norway
Chairs:
Prof. Heide Siggelkow, Germany
Tanja Richter, Germany

 

Questions and Answers & Closing remarks
Chairs:
Prof. Andrea Giustina, Italy
Natalie Grosset, France