The purpose of the Rare Autoinflammatory Conditions Community- UK, is:
For UK patients, directly or via parents and/or carers, to have genetic testing receiving a diagnosis for Autoinflammatory Conditions.
For UK patients, parents and carers to be able to access the right treatment through the NHS.
For UK patient’s quality of life to be improved so that they can fulfill their potential.
For UK patients, parents and carers to support each other and to preventing patients from feeling isolated. We do this through our Facebook support group.
For the public, carers and medical professionals to be well educated about both the emotional and physical effects of Autoinflammatory Conditions.
For the UK to have implemented its Strategy for Rare Diseases in England.
For patient care to be well coordinated
For patients, parents and carers to be able to access relevant Disability/ Sickness benefits for financial support such as Disability Living Allowance/ Personal Independence Payment, Employment and Support Allowance and Carers Allowance.
Primary Contact Name: Rachel Rimmer
Contact Person Email: firstname.lastname@example.org
# of Hours 10