Welcome to the Swiss Rare Disease Registry (SRDR)
In Europe, a disease is considered rare if it affects less than one in 2,000 people. In total, about 8,000 different rare diseases are known. In Switzerland alone, about 580,000 people live with a rare disease, but unfortunately, we know little about the etiology, diagnosis, clinical course, and treatment options for many of these diseases.
The Swiss Rare Disease Registry (SRDR) is a national registry. Our mission is to collect information on as many people as possible with a rare disease who live and/or receive treatment in Switzerland. By doing so, we aim to provide a research platform and fill the knowledge gaps regarding rare diseases. The SRDR is a central point of contact for treatment providers, researchers, affected persons, and politicians. We provide figures on the prevalence of rare diseases in Switzerland, allow evaluation of the quality of care, and identify areas where action is most significantly needed. Through surveys, the SRDR can determine the quality of life and needs of persons with a rare disease and their families. The SRDRalso aims to promote harmonization and integration of data and methods among the myriad of existing disease-specific registries, strengthen our exchange with international rare disease registries for research and policy purposes, and provide a network for exchange between patients and caregivers.
For further information please visit the SRDR website: https://www.raredisease.ch
Downloads:
Further Links:
https://www.orpha.nethttps://www.orphadata.com
https://www.orphadata.comhttps://od4rd.eu
https://github.com/OD4RD/Main-Help-Deskhttps://dataviz.orphacode.org
Contact:
Questions for the SRDR: srdr.ispm[at]unibe.ch, phone: +41 (0)31 684 48 87
User-Support: swissrdl.ispm[at]unibe.ch +41 0(31) 684 59 66
Technical issues: swissrdl.ispm[at]unibe.ch +41 (0)31 684 56 40
