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.