Lysosomal Storage Disorders (SALS)
A Swiss working group of physicians and scientists involved in the coordinated diagnosis, therapy and care of patients with lysosomal metabolic diseases introduces itself. The Swiss Association for Lysosomal Metabolic Diseases – SALS – is a network of clinically and scientifically active physicians and laboratory staff from all over Switzerland, founded in August 2007.
The network involves specialists from all medical disciplines who focus on these diseases. The metabolic centres of the university hospitals of Bern, Lausanne and Zurich and the metabolic departments of Basel and Geneva are represented, as are neurologists, neuro-paediatricians, cardiologists, geneticists, endocrinologists, haematologists/immunologists, radiologists, nephrologists, orthopaedists, ORL, ophthalmologists, respiratory specialists, rehabilitation doctors, developmental paediatricians, rheumatologists, palliative physicians, internists and nutritionists.
The aim of this network is to effectively coordinate the diagnostic clarification paths and the various therapy options for patients with a lysosomal disease.
The network sees itself as the primary contact and exchange forum for referring physicians, cost bearers, representatives of health policy and the pharmaceutical industry.
Local care networks as well as the specific training of caring professionals are supported. Research projects, therapy processes and unresolved issues are discussed and coordinated within the network and, if necessary, internationally.
The homepage provides access to the metabolic laboratories with detailed information on the diagnostic test procedures offered. An access-protected intranet platform and a continuously updated patient database (national register) are available to SALS members.
A coordinated approach is to be taken towards the public in order to improve awareness of these disease identities. SALS is convinced that through a national consensus and united efforts, significant progress can be made for patients with lysosomal diseases.