It is with great sadness that we inform you that our friend and ECTS member Gerald Brandt passed away on 20 May 2023.

Gerald was the founder of Hypophosphatasie Deutschland eV, the first HPP patient advocacy group active in Europe and worldwide.  Thanks to his dedication and courage, he helped many HPP patients and families, he contributed in raising the awareness of the disease, shared the patients’ voice.

Gerald was also advocating for better coordination amongst the whole rare bone diseases community and that, was the starting point of the collaboration with ECTS.  He joined ECTS 2017 in Salzburg and discussed with the ECTS Board for the creation of a pan-European Rare Bone Diseases multi-stakeholder group where rare bone diseases Patient Organisations would meet, collaborate and learn from each-other, from the scientists and clinicians.  The concept evolved to a RBD Patient Group Leaders meeting during ECTS 2018 in Valencia and the founding of the European Rare Bone Forum in June 2019.

HPP Deutschland was the recipient of the ECTS Charity Event in 2017.  Gerald spoke during ECTS 2019 in Budapest and at several occasions collaborated with ECTS to help us identify the patients needs and journey when drafting our guidelines, planning our activities.  Gerald developed a theory that  Tutankhamun suffered from hyposphosphatasia https://pubmed.ncbi.nlm.nih.gov/24466636/

We would like to take the opportunity to express our deepest sympathy and condolences to the family, his assistant Kimiko and all friends.

We will miss you Gerald!

The European Calcified Tissue Society

ECTS, ERN BOND and EuRR-Bone are pleased to announce the set up of a new registry on Melorheostosis.

This disease specific module is a joint project of the Rare Bone Disease action group of the European Calcified Tissue Society (ECTS) , the European Reference Network for Rare Bone Disorders (ERN BOND) and the European Registries for Rare Bone and Mineral Conditions (EuRR-Bone). 

To date, the knowledge on rare diseases is scarce, information is frequently fragmented, and data are scattered among different institutions and hospitals. This scenario affects the diagnostic process, delay the potential treatments and slowdown the research activities.

The identification of a set of common data elements, composed of core information on disease history, clinical expression features (including imaging evaluations), genetic assessment, treatments and surgical procedures, sample availability will support the merging process and allow to create a wider and well organized dataset.

>> Please find here more information about the Melorheostosis module

>> You may also be interested in the ECTS-ERN BOND Webinar on Melorheostosis

ADDITIONAL CHANCE TO SUBMIT YOUR ABSTRACT TO #ECTSBRS2023

Many thanks to our members and attendees who have submitted abstracts and clinical cases for #ECTSBRS2023.