Receiving support from RACC – UK
Whatever kind of day that you are having, we are here for you. We can offer up to 1 hour scheduled consultations with you either by phone or video call.
While we are not Medical Professionals, we are patient led. It is useful to talk to someone who really understands the complexity of this patient journey.
You can call us on 07377091552 or send us an email to the designated patient support email address: support@raccuk.com
Types of support we have provided to patients and families:
– Supporting letter to employer
– Supporting letter to GP and signposting them to the ‘Periodic Fever Syndrome Genetics Panel’.
– Supporting letter to your consultant regarding Autoinflammatory / Periodic Fever Syndromes
– Supporting letter’s regarding housing issues (to council associations).
*Please note that we may be attending meetings or webinars when you call so please leave your name and number and we will call you back as soon as possible.
Need help advocating for your child in school?
Sometimes it’s about raising awareness of symptoms and the unpredictability of the conditions. You might have been called into school because your child’s attendance is low. Your child may benefit from additional support in school. As long as you are willing to sign our consent form, we can liaise with schools for a range of matters. Alternatively, you can give our details to your child’s school for them to contact us directly (info@raccuk.com).
Other advocacy work:
When we are not giving 1:1 or group support to patients and families, we are busy networking with other organisations across the UK and within Europe. We are stakeholders for drug consultations, policy and appraisals. We may reach out to you for a specific condition so that we can highlight the patient experience accurately. This is usually known as a ‘Patient Impact Report’. Since we have been doing this area of work, we have been involved in five successful funding and drug consultations with NHS England and NICE. We hope to be able to expand our involvement in national policy in other areas in the near future.
