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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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Canakinumab / Ilaris

Updated: Nov 4, 2019

For the past few months, we have been working with NHS England as a Stakeholder in the Clinical Reference Group, Allergy and Immunology (Blood & Infection).

Stage 1 - reviewing the consultation document that included the clinical evidence of the trial of the drug. There was an opportunity for us to be able to provide feedback on the document.

Stage 2 - we were contacted by the clinical reference group to provide a patient impact report, along with other organisations. Only one report could be submitted as a whole, so were allocated 50% word count to allow others an opportunity. Unfortunately, others either declined this opportunity or felt that they did not have enough time to complete by the deadline given. This does mean that there isn’t a complete report to submit, however, what we have provided can be used in the future. In recognition of our hard work and commitment, we shall be receiving a sum of £750.00

Stage 3 - we have been given a fantastic opportunity to attend the ‘Clinical Priorities Advisory Group’ meeting on Monday 4th November 2019. Here we will be able to network with NHS Colleagues, understand the drug consultation process in more detail, and have an opportunity to ask questions.

We would like to take this opportunity to thank our colleagues at NHS England for giving us this opportunity to feed into the consultation process and allow patient voices to be heard.

We will update you with more information after the meeting!

Written by: Rachel Rimmer (01/11/2019)