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

Contact Us: info@raccuk.com


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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CoOrdinated Care Of Rare Diseases

"The aim of the study is to investigate how care of people with rare diseases is coordinated in the UK, and importantly, how patients and families affected by rare diseases, and the healthcare professionals who treat them, would like care to be coordinated. The detailed objectives of the study are:

To undertake a review of published evidence to identify in detail what ‘coordinated care’ means, what the components of coordinated care are, and how coordinated care for people with rare diseases might be similar or different to coordinated care for people with other conditions. To understand whether and how care of people with different rare diseases is coordinated in the UK. To analyse preferences for different types of coordination by patients and families, and health care professionals. To develop a detailed map (a ‘taxonomy’) of all possible types of care coordination, based on what currently happens and what patient and professional preferences are. To calculate the costs of the types of coordinated care identified in the taxonomy. To work closely with patients and families throughout the project and disseminate findings widely.

The CONCORD research team are doing this using interviews, focus groups and workshops (qualitative research) and a survey (quantitative research). We will hold events for healthcare professionals, people who decide how services are provided (commissioners), and patients and families, so they can tell us how to make our findings helpful to them.

We are involving patients and family members throughout the study, and have established a patient advisory group to advise on recruiting participants and interpreting the findings. The advisory group is chaired by Lara Bloom (Ehlers-Danlos Society) and Kerry Leeson-Beevers (Alstrom Syndrome UK) who are also members of the research team.

The study has so far included initial interviews and focus groups. Our major survey, for rare disease patients, carers and healthcare professionals, is currently live.

Do you know of any healthcare professionals (working in health, social and voluntary sector settings), local and national commissioners, and patient group/charity representatives? Are they willing to be interviewed by Dr Holly Walton? Please get in touch: Holly.Walton@ucl.ac.uk."


YouTube Video: https://youtu.be/l2KN2cOjOKI