About Us
Rachel Rimmer
After grappling with various possible diagnoses for years, I was eventually diagnosed with Mevalonate Kinase Deficiency at the age of 16, despite showing symptoms since birth. By the time I was 27, I had successfully completed my school exams, obtained my driving license, and earned my University Honours Degree. However, the challenges of maintaining full-time or even part-time employment became too overwhelming due to my inconsistent health. It became clear that a change was needed in the UK. In 2017, I reached out to other organisations and connected with families across the UK to establish a support network. No one should have to go through this journey alone. By 2019, the demand for support for families affected by Autoinflammatory conditions exceeded our expectations. It was then that the Charity was established.
Our Vision
Collaboration with pharmaceutical companies to better understand how drugs can improve and manage the healthcare pathway of people living with autoinflammatory conditions.
A world where our organisation is measurable in terms of where people turn to us and are often seeking a solution.
Our together lived experiences are the one thing that we all share in common to finding and understanding our condition and our journey to our diagnosis based on our symptoms is the one thing that does not define us, but will give us all a piece of mind.
Our Mission
Our mission is to support patients, families and carers affected by autoinflammatory conditions in the UK. We provide consultation for individuals living with autoinflammatory symptoms. We do our best to provide action plans, and emotional support to help people living with our conditions on a day to day basis.
We want to raise awareness and provide education about autoinflammatory conditions and help to educate health professionals who may not have come across our condition’s before. We work to influence and where we can, participate in policy, research, and to improve the diagnosis and treatment of these conditions.
We are guided by core values and the safeguarding of each other and also many undiagnosed people who live with our symptoms day to days
