We are a campaign group for patients suffering from Familial Cold Autoinflammatory Syndrome Type 2 (FCAS2) and their families. We are based in Edinburgh, the capital city of Scotland. FCAS2 is caused by a mutation in the NLRP12 gene.
We also campaign for patients and families with rare autoinflammatory conditions and for people with rare diseases. We work with rare disease organisations in Scotland, the UK, Europe and the United States.
We are self-funded so that we can fight for the needs and aspirations of our community and will represent those as strongly and forcefully as possible.
We try to regularly attend the following Cross-Party Groups (CPG) in the Scottish Parliament and if you cannot attend, and would like something raised, please contact us or another member of the CPG.
Cross Party Group on Rare Diseases (currently being set up)
We have been campaigning for a number of months to have this CPG set up again during this parliamentary session which is now almost one year old.