Who we are

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

Dr Gordon Harvey

Owner and Director Pharmaceutical and Biotech Consultancy, Chair and Trustee

Kay Parkinson

Founder and Company Secretary. Founder of Alstrom UK

Neil Dugdale

Co-founder and Trustee


Simon Mouncer

Recently retired from Finance Director of Medical Research Network and now Trustee and Finance Director  

Tracey Murray

Matron, Outpatients Dept Addenbrookes Hospital and co-founding Trustee


Sharon Barton

Managing Director, Harbour HR Solutions providing HR Consultancy services

Luke Robinson

GM UK, Ireland and Nordics, Biocryst, Advisor

Laurence Woollard

Director, On The Pulse Consultancy & rare disease patient thought-leader and Advisor

Claire Adams

Senior Lecturer, Adult Nursing, University of Hertfordshire and Advisor

Mabella Farrer

Nurse (Adult and Paediatric) and Registered Genetic Counsellor, Addenbrookes Hospital and Advisor

Helena Baker

Nurse, Clinical Consultant and Rare Disease patient and co-founding Advisor