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.
Purpose:
To ensure equality of opportunity for carers in Scotland by liaising with carers’ organisations, lobbying the Scottish Government and promoting legislation on carers’ behalf; to promote awareness amongst Members of the Scottish Parliament of the needs of carers and former carers; to liaise with Members of both Houses at Westminster and the Welsh Assembly in order to share best practice; and to link with appropriate bodies, including carers organisations, on an international basis.
Cross Party Group on Children and Young People
Purpose:
To ensure issues affecting children and young people are recognised and discussed throughout the working of the Scottish Parliament, in order to ensure that the needs and rights of children and young people are met throughout Scotland.
Cross Party Group on Disability
Purpose:
- To act as a channel of communication between the Scottish Parliament, disabled people and organisations working or supporting disabled people.
- To provide opportunities for Members of the Scottish Parliament to learn about needs of disabled people and the barriers individuals face excluding them from performing an active role within society.
- To increase awareness and raise the profile of rights for disabled people.
- To put disability on the agenda of the Scottish Parliament.
HOW CAN THINGS CHANGE?
- By implementing a comprehensive approach to rare diseases;
- By developing appropriate public health policies;
- By increasing international cooperation in scientific research;
- By gaining and sharing scientific knowledge about all rare diseases, not only the most “frequent” ones;
- By developing new diagnostic and therapeutic procedures;
- By raising public awareness;
- By facilitating the networking of patient groups to share their experience and best practices;
- By supporting the most isolated patients and their parents to create new patient communities or patient groups;
- By providing comprehensive quality information to the rare disease community;
- By empowering those affected by rare diseases;
- By identifying and preventing rare diseases;
- By increasing diagnosis and early intervention;
- By co-ordination of care between health and social services;
- By embracing the role of research.
