Cambridge Rare Disease Network is a newly established charity working to build a community of people in Cambridge to address the unmet needs in rare disease research and treatment. Our trustees include some of the UK’s foremost experts in rare diseases, and our founding members come from diverse backgrounds in academia, business, healthcare and patient support networks.
Medical research and drug development have transformed the outlook of countless people living with diseases that were formerly untreatable. Our challenge now is to create and maintain a climate that fosters innovations in health while providing widespread access and meeting therapeutic needs.
CEO – Kay Parkinson
Kay Parkinson was the mother of two children who were diagnosed with the ultra rare disease Alström Syndrome when they were aged 18 & 15, having had four previous mis-diagnosis. Both children died following heart and heart/kidney transplantations aged 25 and 29 respectively. She qualified as a lawyer in 1996 as a mature student, specialising in charity law.
In 1998 she founded the charity Alström Syndrome UK (ASUK). Kay served as their CEO for 15 years before stepping down in 2013 to start up Alström Europe (AS EU) charity. In 2015 Kay joined the Cambridge Rare Disease Network as Chief Executive she believes all rare diseases need to work together for better diagnosis, treatments, services and a much needed higher public profile.
Summit and Events Director – Jo Balfour
Jo is one of the founding members of the CRDN and is a steering group member. She manages the annual conference and networking and educational events and is founder of the Unique Feet rare dance and community support group. She also supports the organisation of CRDN’s fundraising events.
Jo is a highly experienced teacher of 25 years with specialisms in special educational needs and children in care. She is an advisory teacher for Cambridgeshire’s Virtual School for Looked After Children supports and challenges schools to provide the best care for marginalised and vulnerable young people with exceptional circumstances to enable them to achieve aspirational goals in all aspects of their education. She uses her strengths in crisis management and positive change and her in depth knowledge of the systems and processes involved in delivering best practice for students with SEND to support and advise patients and families living with rare disease in our community in achieving best outcomes in education .
The CRDN was co-founded by Dr Jelena Aleksic and Dr Tim Guilliams, who met during their PhD studies at the University of Cambridge.
Both have since set up companies making an impact in rare disease diagnosis and treatment: Jelena is CEO of GeneAdviser, making it easier for doctors to order clinical genetic tests, and Tim is CEO of Healx, repurposing approved drugs to create new therapies for patients with rare diseases.