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For Policy Makers

How the University shapes and guides policy in the area of rare disease.

Strong emphasis on impact

Newcastle University strongly supports its researchers to turn their results into policy change.

For examples, please see our dedicated Policy Academy.

Our experts can provide policy input to developments in particular disease areas.

You can find both an overview and details of core disciplines of relevance to rare disease here.

Contact to let us know what kind of expertise you are seeking.

We will get back to you. 

Unique track record in policy-making

We are proud of our track record in elaborating, shaping and implementing policies for rare disease, at cross-disease level. For example, our experts:

  • played a unique role in implementing European Reference Networks (ERNs) for rare disease. Newcastle also actively led several ERNs
  • supported the work of the European Expert Groups for Rare Disease, by drafting recommendations on a range of topics such as:

          1. registration and data collection
          2. cross-border genetic testing
          3. the incorporation of rare disease to social
              policies and services.

  • played a lead role in a Foresight Study for the international Rare Disease field, Rare 2030
  • developed future-facing recommendations designed for national and international policymakers. These will guide the rare disease field across the coming decade. We are now working to implement these recommendations
  • work with policymakers across Europe to support robust strategies for rare disease

Shaping UK and international policy

These support the work of the European Expert Groups for Rare Disease. Much of our policy activity centres on key UN Sustainable Development Goals.

Within our focal disease areas, our experts shape national and international policy. Such areas include:

  • newborn screening
  • orphan medicines' availability
  • gene therapy
  • mitochondrial donation
  • social support
  • universal health coverage

A rare disease often poses a heavy burden on patients - our research, care, and policy activities aim support people to live as rich and full a life as possible.

Find out more

For more on our plans here, see 'Policy, Regulation and Social Science'. For which Victoria Hedley received the 2021 European award for policy leadership.