Rare Autoinflammatory Conditions Community - UK (RACC-UK)
RACC - UK is the UK’s patient-run, patient charity 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. Also, we are involved in the EURORDIS Drug Force Task, DITA (2019-2020)
We are registered stakeholders for NHS Clinical Reference Groups relevant to Autoinflammatory conditions.
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.
The symptoms that patients can suffer from with Autoinflammatory Conditions...
Aphthous Ulcers: Mouth and Genitals
Inflammation of the stomach, joints and skin
Uveitis (inflammation in the eyes)
High C- reactive protein (CRP)
Enlarged Lymph Glands
Norvartis- Periodic Fever Syndromes
World Autoinflammatory Awareness Month
Organisations around the world are coming together to raise awareness about Autoinflammatory conditions.
"Published on Nov 14, 2012
Animated infographic on periodic fever syndromes - rare, long-term inflammatory diseases characterized by repeated bouts of fever in recognizable patterns. They are caused by gene mutations which affect"