Hypoparathyroidism Patient Forum

This project is kindly supported by a restricted grant from Takeda.

The Hypoparathyroidism Patient Forum is a new pilot project from the ESE, which brings together clinical experts and patient group representatives from across Europe to understand and identify the needs of patients with hypoparathyroidism.

Hypoparathyroidism (commonly known as ‘hypopara’) is a rare endocrine condition. It is caused when the parathyroid glands in your neck are inactive or produce too little parathyroid hormone (PTH) – which in turn leads to low blood calcium levels or hypocalcaemia.

The direction of the Forum’s programme of work is led by a Working Group. The co-chairs of the Working Group are Prof. Andrea Giustina, ESE Past President and Natalie Grosset, President of Hypoparathyroidism France.

ESE is committed to ensuring that we are reflective of the needs of the communities that our members represent. As such, the objectives of the Forum are to:

  • Partner with the patient community and provide them with a platform to voice issues they are facing
  • Identify specific clinical and educational initiatives which will support a pan-European approach to the management, treatment and general care of people with hypoparathyroidism.

As part of the project activities, the 1st Hypoparathyroidism Patient Forum  was organised on 26 March 2022.
150 participants attended this event, which offered talks by clinical experts and hypopara patients. The video recordings from the meeting are available here.

 

Patient Forum 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
Helen Dahl-Hansen, representative of hypoPARA Norge, Norway
Liz Glenister, representative of Parathyroid UK
Peter Lakwijk, representative of Thyroid Federation International
Tanja Richter, representative of Netzwerk Hypopara, Germany