Rachel Rimmer
Founder and Chair Person
Rachel was diagnosed in 2003 with Mevalonate Kinase Deficiency (MKD), a rare Autoinflammatory condition affecting approximately 300 people worldwide. Despite having symptoms from birth, she was misdiagnosed for 16 years. Due to the rarity of MKD and the resulting lack of UK knowledge, Rachel required specialist care at the National Amyloidosis Centre in London.
Initially, this complex diagnosis led to feelings of isolation. However, Rachel found relief by connecting with other UK patients who shared similar challenges with genetic testing, diagnosis, and treatment access. Driven to prevent others from experiencing the isolation she felt, Rachel founded RACC – UK, which was awarded Charitable status in 2019. The organization’s goal is to unite and improve the lives of UK patients with these conditions.
Rachel’s advocacy journey began around 2009 with an interview at Great Ormond Street where she discussed the impact of MKD on life and family. In 2014, she graduated from Oxford Brookes University with a BA (Upper Second Class Honours) in Early Childcare Studies. Following her graduation, she was elected as a Students’ Union Vice President, a role that provided extensive experience in large-scale advocacy, policy influence, and campaign management, including mental health initiatives. She also served as a trustee during this time.
Mark Telkman
Patient Engagement Trustee
Graduating in 2018 with a master’s degree in mechanical engineering, Mark’s interest in science research led him to begin working at the Science and Technology Facilities Council (STFC) in 2019. Here, he has worked at both the Central Laser Facility and now at the ISIS Neutron and Muon Source.
Mark is a keen advocate of people with a range of disabilities. Mark has been diagnosed with Ankylosing Spondylitis and knows the challenges that a life with both chronic illnesses and biological therapies can bring. It is through this that his passion for volunteering began. Mark has now been working with RACC-UK for 3 years since March 2023.
Despite Mark’s health, he remains active, enjoying Cricket and Hiking. In October 2024, Mark completed three sections of the Via Francigena, walking 650 km and ending at the Vatican, raising £2500 for charity!
Frankie Dickens
Business Development Trustee
After completing a degree in Biological Science at the University of Birmingham, Frankie started her career in Open Access publishing where she worked to advance scientific
research by widely disseminating crucial Public health research. She subsequently worked with various publishers across a range of topics before transitioning into a role as a Product Manager for a data repository.
Still strongly motivated by the mission to improve society through the open sharing of key scientific research, and wanting to make a greater impact within the health sphere, Frankie joined the organisation as a Trustee in May 2024, where she oversees the business strategy.