Rare bone diseases
Swiss Group of rare BONe Diseases & non-inflammatory connective tissue disorders (SG BOND)
Steering committee: Andrea Trombetti (president, HUG), Elena Gonzalez Rodriguez (secretary, CHUV), Marianne Rohrbach (SGIEM; Universitäts-Kinderspital Zürich), Christian Meier (SVGO; UKKB);
Board member: Manuela Schöb (KSSG), Albrecht Popp (Inselspital), Carol-Claudius Hasler (UKKB), Aline Bregou (CHUV), Eleni Tsiantouli (Moncucco);
SG BOND is a network of professionals involved in the diagnosis and multidisciplinary management of rare diseases affecting bone and connective tissue. The group aims to provide the best possible support for patients with rare bone and connective tissue diseases, their carers and their families.
The Swiss Group for Rare Bone and Connective Tissue Diseases is a sub-group of the SGIEM (Swiss Group of Inborn Errors of Metabolism) and SVGO/ASCO (Schweizerische Vereinigung gegen die Osteoporose / Association Suisse Contre l'Ostéoporose) associations.
Objectives:
SG BOND is interested in all rare diseases affecting cartilage, bone and dentine, mainly of congenital, chronic and genetic origin. It is also interested in non-inflammatory connective tissue diseases.
The group aims to contribute to the development, growth and expansion of knowledge and treatment options for these diseases, in collaboration with physicians, healthcare partners, institutions and patient organizations.
Patients who are members of SG BOND are invited to participate actively in SG BOND to develop tools that will help them receive better treatment. For example, we have designed an emergency card for patients with osteogenesis imperfecta so that they can receive better care in an emergency (see svoi.ch).
The group puts a patient suffering from a rare disease in touch with an expert in his or her field in Switzerland, or abroad if no such expert exists in Switzerland.
The group can act as an intermediary for pharmaceutical companies seeking to establish a partnership contract for clinical studies taking place in Switzerland and of national scope.
Admission:
Membership of the group is open to individuals (doctors, carers, researchers) who care for or suffer from a rare bone or connective tissue disease, and who wish to contribute to the objectives described above.
Admission to the SG BOND group implies that the individual is already a member of the SGIEM or SVGO/ASCO associations. Patients who are members of SVGO/ASCO can become members of SG BOND.
Application for admission to SG BOND must be made in writing by e-mail, to the SG BOND coordinating committee via the contact e-mail address. The coordinating committee decides on the admission of new members after ascertaining their affiliation to one of the umbrella organizations.
Timetable :
- 12.06.2025: General Meeting SG BOND 2025 (during the SVGO/ASCO Annual Meeting)
Contact:
Mission:
-Facilitate patient treatment through a holistic, multidisciplinary, networked and coordinated approach, based on the latest knowledge.
-Reduce the time between initial presentation and diagnosis by improving understanding of these pathologies and presenting complex cases in a network.
-Ensure the continuing professional development of professionals by teaching them about advances in research and clinical developments.
-Develop networked research collaboration between the various Swiss centers that care for patients with rare bone and connective tissue diseases.
-Improve understanding of patients' clinical history and general care.
-Communicate with federal and cantonal authorities to facilitate care, access to care and knowledge of patient organizations for sufferers and their families.
-The group aims to provide the best possible support for people with rare bone and connective tissue diseases, their carers and their families.
-SG BOND also aims to improve knowledge and care coordination in collaboration with GPs and family carers.
Various meetings for professionals and those concerned are held throughout the year. In addition, the entire SG BOND meets once a year for a general assembly, either at the SVGO/ASCO annual meeting or at the SGIEM annual meeting.
