Rare

Autoinflammatory

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Support, connection and hope for those living with rare autoinflammatory conditions.

RACC-UK

Launched in 2019, RACC-UK is a registered charity dedicated to improving the lives of people living with rare autoinflammatory conditions.

Based in Oxford, we support patients and families across the UK. Founded by Rachel Rimmer following her own experience of living with a rare autoinflammatory condition, RACC-UK was created to ensure that no one has to face the challenges of a rare condition alone.

We provide tailored support, resources and a safe space to talk, recognising that every individual’s experience is different. Since our registration, we have supported over 100 people and are continuing to expand our activities to reach even more individuals and families.

Our Services

An elderly female patient sitting up in a medical bed with two relatives visiting her in the room.

Support for Patients, Families and Carers​

  • Free 1:1 Consultations
  • Action Plans
  • Supporting letters for referrals and genetics
A male doctor in a lab coat holding a tablet.

Medical and Care Professionals

  • Refer patients, families and carers for peer support via our referral form
  • Present your research of Autoinflammatory conditions to our community
  • Invite us to join family support meetings
Three university students sat on a bench outside reading tablets.

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

You donate. We make things better.

Over the past 7 years, we’ve helped to improve the lives of hundreds of people living with rare autoinflammatory conditions.

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Fundrasing News

A group of people walking on a rocky path on a hill in the Peak District.

Team Bore climb the Three Peaks of Wales in 24 hours for charity!

Lauren and her friend organized Team Bore after experiencing the challenges of securing a proper diagnosis for Louie’s severe recurrent fevers and systemic pain. 

Mark and his friend looking happy before their walk begins.

Mark Telkman goes walking in Switzerland and Italy!

I have a made a very stupid decision to do lots of walking in September-October 2024 by walking the parts of the Via Francigena pilgrimage route in three stages. I will be starting in Lausanne, Switzerland, and ending at the Vatican. It is really long. Like, ridiculously long.

A man and two young children holding hands whilst paddling near the shore at the seaside.

Forced Family Fun! We run in memory of Adam (VEXAS Syndrome).

We are raising awareness of a condition called VEXAS syndrome in loving memory of Adam. VEXAS syndrome is a very rare autoimmune condition that can sadly be fatal. The immune system attacks tissue throughout the body and causes inflammation and swelling. It is more common in men over the age of 50.

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/).