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Aug 25, 2017

Assistance to Prepare Gov't Documents for RACC-UK

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Edited: Sep 20, 2017

 

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: rareautoinflammatorygroupuk@gmail.com

 

# of Hours 10

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