We are rare disease nurses, genetic counsellors, parents to children with rare disease, people that have rare diseases ourselves or people who are passionate about making a positive difference.
Chair, Founders and Trustees
Kay Parkinson
Interim Chair, Founder and Company Secretary. Founder of Alstrom UK
Neil Dugdale
Co-founder and Trustee
Watch Kay’s story
Hear more about Kay's personal experience with rare disease, and the heartbreaking but inspiring journey that has brought us to the Rare Disease Nurse Network we have today.
Trustees
Zoe Morrison
Children’s nurse and Syndrome Without A Name Clinical Nurse Specialist
Simon Mouncer
Recently retired from Finance Director of Medical Research Network and now Trustee and Finance Director
Helena Baker
Nurse, Clinical Consultant and Rare Disease patient and co-founding Advisor
