The Swiss Group for Inborn Errors of Metabolism (SGIEM) networks professionals involved in the diagnosis and clinical follow-up of patients in whom an innate metabolic error (ADR) is suspected or proven. Our professional association includes physicians, dieticians, biochemists, biologists, psychologists, geneticists… working directly with patients and/or active in ADR research.
Several sub-groups have been formed within the SGIEM:
– professionals involved in the management of adult patients
– professionals more specifically involved in the management of lysosomal diseases (SALS)
The SGIEM’s main missions are to
1) Coordination at Swiss level of clinical management of patients with ADRs, in collaboration with paediatric and adult clinics A and B.
2) Coordination of neonatal screening for congenital metabolic diseases; preparation and submission of proposals for the extension of neonatal screening to the FOPH.
3) Coordination of the offer in specialised metabolism analyses in university hospitals; contact with the FOPH for the valorisation of metabolism analyses in the list of analyses.
4) Development of harmonized therapeutic approaches to ADRs.
The SGIEM aims to guarantee patients with ADRs a consistent therapeutic approach in all centres in Switzerland and, as far as possible, in line with recommendations from other European countries.
5) Contact person for the FOPH when submitting internationally recognized drugs for the treatment of metabolic diseases to the FOPH’s list of specialties (LS) or the list of drugs for congenital disabilities (LMIC) or certified dietary foods, in order to ensure their reimbursement by health insurance and the IV.
6) Lead and/or participate in international working groups for the development of recommendations for the diagnosis and treatment of ADRs.
7) Continuing Education: Since 2004, SGIEM has organized several annual continuing education sessions covering both topics of clinical interest and advances in basic research.
The SGIEM is committed to defending the basic values of our profession and professional ethics: both towards our colleagues in other specialities and towards patients.