Patient Resources

by Rachel Rimmer in Oxford, England, United Kingdom

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This project will only be funded if at least £2,000 is pledged by April 29th 2019 at 5:19pm

We want to be able to produce information resources and create patient handbooks for appointments and in cases of emergencies.

by Rachel Rimmer in Oxford, England, United Kingdom

RACC-UK is a patient-led non-profit organisation that offers a lifeline to UK patients, parents and carers who are affected by a range of Autoinflammatory conditions. Our organisation provides emotional and practical advice for patients and their loved ones. In addition, RACC-UK is a member of the European Reference Network on Rare Primary Immunodeficiency, Autoinflammatory and Autoimmune diseases as well registered as being a stakeholder for the 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. The barriers to genetic testing, diagnosis and post diagnosis fail to provide access to wider specialist support, due to a lack of understanding of Autoinflammatory conditions.

By providing patients, families and carers with the necessary resources it will enable patient information to be shared with all health care professionals involved in patient care. This is particularly important in cases of emergencies due to the rarity and complexity of the conditions.