What's new for Sophie?

Sophie Thomas, our Senior Head of Patient Services and Clinical Liaisons explains her change in role at the MPS Society and new work with the Rare Disease Advisory Group (RDAG).


I am a patient advocate with over 25 years experience of working within the health and social care field. For the last 19 years, I have specialised in rare diseases, specifically MPS and related Lysosomal Storage Disorders. I joined the MPS Society’s advocacy support team on 25 March 2002 as an office assistant, supporting advocacy officers in arranging meetings, coordinating outreach clinics, organising events, running the database and telephone helpline.

Soon after, I progressed to becoming one of the advocacy support officers and then leading and managing the team for 15 years before handing over the reins fully in 2020. This was to take forward a new and exciting position of Senior Head of Patient Services and Clinical Liaisons.


This new role allows me to expand my role across all patient services, to maximise patient outcomes and wellbeing and to ensure patients remain the focus of decision making across all areas.


My aim is to ensure health care professionals are informed of the unique challenges faced by patients, both clinically and socially and to develop pathways that enable us to achieve joint promotion; shared understanding and to advance standards of care, to ensure the health and wellbeing of patients with not just MPS but related Lysosomal Storage Disorders and rare diseases.

My aim is to ensure health care professionals are informed of the unique challenges faced by patients both clinically and socially.

In January 2021 an opportunity presented itself to apply for a position as a patient and public voice partner in the NHS’s Rare Disease Advisory Group (RDAG). They were looking for representatives with an interest in rare diseases and who had an interest in the promotion of excellence in health and social care as well as an understanding of national strategy development. The role of RDAG is to make recommendations to the NHS across all the devolved nations on developing and implementing the strategy for rare disease and specifically highly specialised services, which MPS and related diseases fall into.


The change in my role and the opportunities to further contribute to the development and improvement of services within the NHS made absolute sense. Some may say it is was serendipity! Following a rigorous interview process, I was offered the role of PPV representative for RDAG and took up this position in March 2021.


I look forward to the opportunities this new workstream will bring and to hopefully making positive changes for all rare diseases.


Congratulations to Sophie on her new role!