Autoinflammatory Conditions in the UK

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RACCUK
RACCUK Online Community Member Posts: 2 Connected
edited September 2019 in Rare, invisible, and undiagnosed conditions
About: Rare Autoinflammatory Conditions Community - 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

  • April2018mom
    April2018mom Posts: 2,863 Championing
    How do you support people?

    What do you provide in terms of services? 
  • RACCUK
    RACCUK Online Community Member Posts: 2 Connected
    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.

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