To relieve the needs of patients, families and carers affected by Autoinflammatory conditions in the UK by:
(a) Providing information, support and advice.
(b) Raising awareness of Autoinflammatory conditions.
(c) Providing data when supporting research in relation to Autoinflammatory conditions.
A safe space community for patients, parents and carers both diagnosed and undiagnosed with Autoinflammatory Conditions within the UK.
To signpost and enable discussions amongst patients, parents, carers and the public around finding genetic testing for the conditions and reaching a full diagnosis as early as possible.
To signpost and enable discussions among patients, parents, carers and the public around accessing treatment through the NHS.
To raise awareness of Autoinflammatory conditions within the UK by sharing patients’ stories via social media, blogging, websites and potentially leaflets etc. Once funds are sufficient, then a website and leaflets will be designed. Leaflets will be given to hospitals around the UK to inform patients of our group.
An annual event where patients, parents and carers can come together to meet away from social media, discuss their most recent experiences and their next steps. Also, inviting medical professionals to talk about their latest research