Rare Autoinflammatory Conditions Community - UK
Launched in 2019, RACC-UK is a registered charity with a mission to improve the lives of those living with a Rare Autoinflammatory Condition.
We are based out of Oxford but offer support to patients from across the UK. Since our registration we have been able to help over 100 individuals and are looking to expand our activities to provide support to an even greater number of individuals.
RACC-UK was launched by Rachel Rimmer following her experience living with a rare autoinflammatory condition with the ambition to be a Platform for assisting other individuals suffering from a rare autoinflammatory condition.
At RACC-UK it is our mission to improve the lives of those living with a rare autoinflammatory condition. Suffering from a rare autoinflammatory condition can be an overwhelming and lonely place, here at RACC-UK we hope to offer support to patients that is tailored to the unique individuals that they are. We know that every experience of a rare autoinflammatory condition is different, and we want to provide resources, support, a safe space to talk to ensure that patients and families never feel alone.
The Rare Autoinflammatory Landscape
Rare Diseases
A disease is defined as rare if it affects fewer than 1 in every 2,000 of the general population; however, whilst rare diseases may be individually rare, they are collectively common, with 1 in 17 people being affected by a rare disease at some point in their lives (this amounts to over 3.5 million people in the UK).
Advances in Technology
Recent advances in technology alongside changes to government policy have looked to improve the care for patients with rare diseases. This includes projects focused on improved diagnosis such as the 100,000 genomes project and UK government initiatives such as the UK Rare Disease Framework, the 2024 England rare diseases action plan, and the All Party Parliamentary Group on Rare, Genetic and Undiagnosed conditions.
Autoinflammatory Conditions
Rare Autoinflammatory Conditions make up a sub-section of rare diseases and affect around 5 out of every 10,000 people. They can be defined as clinical disorders marked by abnormally increased inflammation caused by dysfunction in the innate immune system. With advances in research, we are increasingly recognising more conditions and to-date have identified over 7,000 rare diseases; however, with this many conditions it can be hard to get a diagnosis and to receive appropriate treatment.
International Collaboration
There are also international projects focused on developing the education around rare diseases and establishing international research collaborations. The European Reference Networks (ERNs) have been established to allow knowledge sharing in relation to specific cases and include participating centres across 28 countries including the UK. (https://ern-rita.org/)
Services
Patients, Families and Carers
- Free 1:1 Consultations
- Action Plans
- Supporting letters for referrals and genetics.
Education
(Schools, Colleges and Universities)
- Refer students, families and carers for peer support
- Develop your understanding of Autoinflammatory conditions – know the signs
- Invite us to EHCP meetings, family support meetings
Medical Professionals
- Refer patients, families and carers for peer support via our referral form
- Develop your understanding of Autoinflammatory conditions – know the signs
- Present your research of Autoinflammatory conditions to our community
Social Care
- Refer clients, families and carers for peer support
- Develop your understanding of Autoinflammatory conditions – know the signs
- Invite us to join family support meetings with schools, health care and early help etc.
Testimonials
