Policy, Regulation and Social Science
Newcastle University plays a leading role in shaping and implementing rare disease policy.
Our unique role in European rare disease policy
We played a unique role in the creating and setting up European Reference Networks (ERN’s) for rare disease. We drafted EU-level recommendations on a range of topics to support the work of the European Expert Groups for Rare Disease (see For Policy Makers for more details).
As a Rare Disease Centre, we:
- support the creation and updating of robust national strategies for rare disease. We work with national policymakers from across Europe (and beyond).
- promote implementation of the future-facing policy recommendations we co-authored, building on our role in the Foresight Study Rare 2030.
- exploring potential for UK-level reference networks and co-developing a model for a WHO global network for rare disease.
- supporting policymaking in specific rare diseases. This includes access to therapies or screening.
Robust policies are necessary to reduce the inequities facing rare disease populations. And to support people in accessing diagnoses, treatment, care, research and social support. Our Centre has a strong track record in shaping and implementing policy.
New Research
There is a major gap in social research for rare disease. We are very interested in undertaking new research in this broad area, to assess the socio-economic burden of rare conditions, and better understand the lived experience of patients and families.
We explore models and strategies for providing more integrated, person-centred and holistic care. (See Care delivery for more details).
We also plan to explore the unique regulatory and ethical challenges of rare disease. For instance, around access to new medicines and therapies. We can capitalise on the broad expertise across Newcastle.
