Organisers: European Calcified Tissue Society and ERN BOND
Topic: Ollier Disease
Speaker: Prof Valérie Cormier-Daire, French Institute of Health and Medical Research, France
Chairs: Dr Luca Sangiorgi, Istituto Ortopedico Rizzoli, Bologna, Italy & Dr Thomas Funck-Brentano, Université de Paris, Paris, France
Date & Time: 3 October 2023, from 16:00 to 17:00 CET

Learning Objectives

After watching this webinar, participants will:

• Identify the imaging features of enchondromas and their extension
• Assess the risk of malignant transformation of endochondromas
• Investigate the association with gliomas and their management

Registration

This webinar is free and open to everyone interested in the field.

Acknowledgements

This programme is supported by Kyowa Kirin in the form of an educational grant. The scientific programme has not been influenced in any way by its sponsor.

Organisers: European Calcified Tissue Society and ERN BOND
Topic: Transition from childhood to adulthood in the care of rare bone diseases
Speaker: Prof Corinna Grasemann
Hosts: Prof Gavin Clunie & Dr Charlotte Verroken
Date & Time: 20 June 2023, from 16:00 to 17:00 CET

Learning Objectives

After watching this webinar, participants will learn about:

• Common challenges of the transition period for patients and for caregivers
• The needs of adolescents with a rare skeletal disorder will be discussed
• The content and requirements of a transition pathway will be presented
• An example of a structured Transition pathway including the required tools and team members will be provided

Registration

This webinar is free and open to everyone with an interest in the field.

Acknowledgements

This programme is supported by Kyowa Kirin in the form of an educational grant. The scientific programme has not been influenced in any way by its sponsor.

About the Speaker

Professor Corinna Grasemann is a pediatric endocrinologist at the Department of Pediatrics of the Ruhr-University Bochum in Germany. She graduated from the Medical school at The University of Essen in Germany in 1997. Following a research fellowship in Endocrinology at the Beth Israel Deaconess Medical Center in Boston, she trained in Pediatrics and Pediatric Endocrinology at the Children’s Hospital in Essen and at Sick Kids Hospital in Toronto, Canada.

Dr. Grasemann has a special interest in pediatric bone disorders and works with her team on rare and acquired skeletal disorders in childhood.  As work package lead in a National project, she has coordinated the development of a structured transition pathway for adolescents and young adults with a Rare Disease (https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02698-2 )

Topic: Osteogenesis Imperfecta in adults
Speaker: Prof Kassim Javaid, University of Oxford, Oxford, United Kingdom
Hosts: Prof Ralf Oheim, University Medical Center Hamburg – Eppendorf, Germany & Dr Alexandra Ertl Raimann, Bicêtre Paris-Saclay University Hospital and National Reference Center for Rare Calcium and Phosphate Disorders, Paris, France
Date & Time: Wednesday 5 July 2023, from 16.00-17.00hrs CET
Format: Live Webinar. On-demand recording to be available after the event

Summary

The webinar, scheduled on 5 July 2023, from 1600-1700 CEST, is designed for individuals who currently practice in rare bone diseases, or are new to the field, and are interested in gaining clinical skills in the topic.

No experience is necessary to participate, we welcome all learners!

The webinar is presented Prof Kassim Javaid who will provide a general presentation of Osteogenesis Imperfecta.  Dr Ralf Oheim and Dr Alexandra Ertl will lead discussions around clinical cases.  The learning format will allow participants to share their experiences and ideas on strategies to evaluate, diagnose and/or manage the patients.  The case presenter will be invited to address 2-3 questions regarding the case to the participants for discussion.

If you are a physician, clinical researcher or other medical provider, you are invited to submit a clinical case that are interesting, unusual, complex and/or controversial regarding presentation, diagnosis, treatment, or coordination of care of Osteogenesis Imperfecta.

Submit your case

Clinical case submissions can be sent to clinicalcase@ectsoc.org outlining:

• Your Name, email address, organisation and country
• Title of the case
• Summary of the case (brief description, including issues you are facing with the diagnosis or presentation of the case. Please make sure the patient cannot be identified)
• Your central questions to be addressed to the audience (2-3)

Deadline for submission : 21 June 2023.

Submit your case now !

Learning Objectives

After watching this webinar, participants will :

• Describe the key clinical features for diagnosis of Type I, III, IV, V, and VI osteogenesis imperfecta
• Describe the management of spinal disease in osteogenesis imperfecta
• Describe the extra-skeletal complications of osteogenesis imperfecta

Registration

This webinar is free and open to everyone with an interest in the field.

Acknowledgement

The 2023 Rare Bone Diseases Webinar Series has been supported by industry on the form of an educational grant.  The sponsors had not influence on the content of the programme.

Organisers: European Calcified Tissue Society and ERN BOND
Topic: Mastocytosis
Speaker: Prof Dr Heide Siggelkow, University Medical Center Göttingen, Germany
Hosts: Dr Tiago Azenha Rama, Centro Hospitalar de São João, Portugal and Prof Morten Frost Nielsen, University of Southern Denmark, Denmark

Date & Time: 6 September 2023, from 16:00 to 17:00 CET

Learning Objectives

After watching this webinar, participants will:

• Have better knowledge of key clinical features for indolent systemic mastocytosis
• Be able to describe the bone complications of indolent systemic mastocytosis
• Improve their skills on the management of osteoporosis in indolent systemic mastocytosis

Registration

This webinar is free and open to everyone with an interest in the field.

Registration is now open

Accreditation

An application for CME accreditation has been submitted to the European Accreditation Council for Continuing Medical Education (EACCME®).

Acknowledgements

This programme is supported by Kyowa Kirin in the form of an educational grant. The scientific programme has not been influenced in any way by its sponsor.

About the Speaker

Prof. Dr. Heide Siggelkow is associate professor for Endocrinology at the Clinic of Gastroenterology, Gastrointestinal Oncology and Endocrinology, Head of the Working Group of Molecular Endocrinology and Osteology at the University Medical Center, Göttingen and Medical Director of the MVZ Endokrinologikum. She works 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, since then she serves as vice-president. 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 congress of the society DGE in Göttingen. Since 2018, she has been 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. Since 2020 she is member of the ESE Education committee and representative in the PARAT programme of the European Society of Endocrinology (ECE). Her basic scientific work 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 was the investigation of mechanisms of osteoporosis in chronic inflammatory bowel diseases. Her clinical research is now concentrated on secondary forms of osteoporosis and on hypoparathyroidism with a special focus on quality of life. invited speaker at international conferences (Gordon, ASBMR, Keystone).