Rare bone disease & Co.
Swiss Group of rare BONe Diseases & non-inflammatory connective tissue disorders (SG BOND)
Steering committee: Andrea Trombetti (president), Elena Gonzalez Rodriguez (treasure), Marianne Rohrbach (SGIEM), Christian Meier (SVGO);
Board member: Ornella Galvani, Manuela Schöb, Albrecht Popp, Carol-Claudius Hasler, Aline Bregou, Eleni Tsiantouli;
The SG BOND is a network of professionals involved in the diagnosis and multidisciplinary treatment of rare diseases that affect bone and connective tissue. The network is for patients, children or adults, suffering from one of these diseases.
Affected individuals who are members of SG BOND are invited to actively participate in SG BOND to develop tools that are useful for them to 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).
Objectives:
-Facilitate the treatment of patients with 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 conditions and presenting complex cases in a network.
-Ensure continuous professional development for professionals through teaching on research advances and clinical developments.
-Develop networked research collaboration between the various Swiss centers that accept patients with rare bone and connective tissue diseases.
-Improve the understanding of those affected with regard to their clinical history and general care.
-Communicate with federal and cantonal authorities to facilitate care, access to care, and knowledge of patient organizations for those affected and their families.
-The group has set itself the goal of providing the best possible support for people with rare bone and connective tissue diseases, their caregivers and their families.
-The group aims to contribute to the development, increase and expansion of knowledge and treatment options in collaboration with doctors, healthcare partners, institutions and patient organizations. It can act as an intermediary for pharmaceutical companies seeking a partnership agreement for clinical trials of national importance conducted in Switzerland.
-The SG BOND also aims to improve knowledge and coordination of care in collaboration with general practitioners and family caregivers. Various meetings for professionals and those affected take place throughout the year. In addition, the entire SG BOND meets once a year for a general meeting – the next meeting will take place on 12.06.2025 in Bern during the the annual meeting of he Swiss Association against Osteoporosis.
Expertise:
SG BOND addresses all rare diseases that affect cartilage, bone and dentine, essentially of congenital, chronic and genetic origin. It also addresses the non-inflammatory connective tissue diseases.
Contact: info@sgbond.ch
