Autoinflammatory Conditions in the UK

RACC - UK is the UK’s patient-run, patient support group for patients and families suffering from #Rare Autoinflammatory conditions.
We are a completely self-funded organisation, led by volunteer patients, parents, and experienced Medical Professionals, in the fields of Rheumatology, Immunology and Nephrology.
We also have several closed private Facebook discussion groups with over 400 members from the UK suffering from #Rare Autoinflammatory conditions.
In addition, RACC - UK, are RIPAG members of the European Reference Network, Rare Primary Immunodeficiency, Autoinflammatory and Autoimmune (RITA) diseases.
We are registered stakeholders for NHS Clinical Reference Groups relevant to Autoinflammatory conditions.
Background: Patients in the UK with Autoinflammatory conditions have often endured a long delay to diagnosis which impacts on long-term health and quality of life. Autoinflammatory conditions are #Rare genetic diseases which often leave patients feeling vulnerable and isolated with little support.
www.raccuk.com / info@raccuk.com / (+44) 07377091552
Registered Charity Number: 1184846
Comments
-
How do you support people?
What do you provide in terms of services?1 -
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.1
Categories
- All Categories
- 14.6K Start here and say hello!
- 7K Coffee lounge
- 77 Games den
- 1.6K People power
- 76 Announcements and information
- 22.7K Talk about life
- 5.3K Everyday life
- 131 Current affairs
- 2.3K Families and carers
- 846 Education and skills
- 1.8K Work
- 475 Money and bills
- 3.5K Housing and independent living
- 962 Transport and travel
- 677 Relationships
- 70 Sex and intimacy
- 1.4K Mental health and wellbeing
- 2.4K Talk about your impairment
- 854 Rare, invisible, and undiagnosed conditions
- 908 Neurological impairments and pain
- 2K Cerebral Palsy Network
- 1.2K Autism and neurodiversity
- 37.2K Talk about your benefits
- 5.7K Employment and Support Allowance (ESA)
- 18.9K PIP, DLA, ADP and AA
- 7.2K Universal Credit (UC)
- 5.3K Benefits and income