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Rare Autoinflammatory Conditions Community - UK (RACC - UK) ®

Contact Us: info@raccuk.com

07377091552

Registered Charity Number in England and Wales: 1184846

ICO: ZA322203 

Disclaimer: Please note that RACC - UK provides this information for the benefit of the Autoinflammatory community. RACC - UK is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individual medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.

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Terms & Conditions

Rare Autoinflammatory Conditions Community - UK (RACC-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.
 

September

Autoinflammatory Awareness Month

#WAAM2019

Organisations around the world are coming together to raise awareness about Autoinflammatory conditions. 

The symptoms that patients can suffer from with Autoinflammatory Conditions...
 
Fevers

Rigours

Sore Throats

Rashes

Gastrointestinal Issues

Enlarged Spleen

Ulcer- Mouth and Genitals

Inflammation of the stomach, joints and skin

Respiratory Issues

Headaches

High C- reactive protein (CRP)

Anaemia

Enlarged Lymph Glands

Video //

Norvartis- Periodic Fever Syndromes

"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"