CJD Support Network Political Activity Statement
Last Updated 11th March 2025
At the CJD Support Network, we are committed to supporting the UK prion disease community. While our primary function is to provide information and support to those affected by CJD and prion diseases, it is important that we speak out about policies that can impact the lives of people affected by prion diseases, and engage with policy makers to progress our charitable purposes, whilst operating within the laws for all charities in the UK on campaigning.
Charities can only, by law, undertake political activity that directly supports the organisation’s charitable purposes. The charity commission uses the term ‘political activity’ to describe activities or campaigning to change or influence policies or decisions taken by national, devolved, local or overseas government, OR public bodies such as regulators or NHS Trusts.
The CJD Support Network charitable purpose
The CJD Support Network’s charitable purposes are (1) to relieve people affected by CJD and all human prion diseases by the provision of information, advice and support, (2) to advance scientific and medical education and research in topics related to CJD and all prion disease.
Our vision is an informed, supported and connected UK prion disease community and our mission is to;
How we can campaign
The CJD Support Network draws on the lived experience of our community members, alongside invaluable input from national specialist clinicians, to identify avenues for campaign work at a UK-level with parliament and policy makers to progress our charitable purposes. We attend parliamentary events and meet with government ministers and MPs. We also collaborate with other organisations and bodies, such as Genetic Alliance UK and the All-Party Parliamentary Group for Rare, Genetic and Undiagnosed Conditions.
What we can’t do
If an activity does not clearly align with our charitable purpose, it is not permitted under charity law, and our Trustees are accountable to the Charity Commission. Additionally, while we advocate for treatment-related research and access to effective treatments in general, we are not in a position to endorse any specific experimental drug treatment. Our Trustees are responsible for ensuring that any political activity we engage in is aligned with our mission and complies with charity law. Furthermore, as a charity, we are legally prohibited from affiliating with or supporting any political party.
Managing conflicts of interest
The CJD Support Network is committed to transparency and integrity in all our advocacy work. Trustees, staff, and volunteers must declare any personal, financial, or professional interests that could be perceived as a conflict of interest. Any potential conflicts will be managed to ensure our advocacy remains independent, evidence-based, and focused on the needs of the prion disease community.