For Patients
Patient partnerships are an essential part of our work. We are always on the lookout for further collaborative opportunities.
Why do we need patient partnerships in rare disease?
Patient engagement in rare disease, diagnostics, research, treatment and care, is essential.
The patient community has a wealth of knowledge from their lived experiences. This can and should play a crucial role in shaping research.
Three quarters of rare diseases affect children, so our specialist paediatric teams play an essential role.
How do we collaborate with patients, their representatives and the public?
We include patient communities in our work in the following ways:
- Partnerships with patient organisations across a huge range of projects and initiatives, which help us to:
- understand patient needs
- establish registries
- develop and deliver training
- develop clinical practice guidelines and family guides
- optimise clinical research and create infrastructure
- Involvement of patients in our many clinical trials here in Newcastle
- Partnerships with patients and patient organisations in the creation of rare disease policy. (Find out more on the Policy, Regulation and Social Science page)
- Advancing and improving paediatric rare disease research through projects such as conect4children. Also, through direct engagement with children and young people's advisory groups
- Outreach to raise awareness of rare diseases and increase public understanding of research
- Delivery of research funded by patient organisations and charities
- Involvement of patients through our specialist clinical services
Make your voice heard
If you are a patient or patient representative with an idea for collaboration, please get in touch.
We would be very happy to hear your thoughts on how we can improve the work we do here. Please contact ncl.raredisease@newcastle.ac.uk or get in touch via our contact form.
People are more than their conditions! Our Centre wishes to support patients in living their lives as normally as possible.
Support from Charities and Patient Organisations
We are grateful to patient organisations and to charitable foundations for their ongoing generosity and support for our work. Over the past decade, our researchers have collectively received more than £250 million for rare disease research, around 25% of which came from such organisations.
Our top charitable funders include:
- Wellcome Trust
- LifeArc
- Jain Foundation
- Blood Cancer UK
- Newcastle Hospitals Charity
- Muscular Dystrophy UK
- Kidney Research UK
- Children's Cancer and Leukaemia Group
- Leech Foundation
- Cancer Research UK
- The POLG Foundation
- Action Medical Research for Children
- Duchenne UK
- British Heart Foundation
- The Lily Foundation
We foster a dialogue between researchers and patients to encourage trust and confidence. In this way, we can be certain that our research is relevant and needed by the patient community. And that it is carried out with integrity.
Patient-centred research
We know that patient involvement in research design and management leads to better outcomes, so we aim to embed Patient and Public Involvement and Engagement (PPIE) in everything we do.
Rare disease patient groups bring valuable insights from their lived experience This knowledge can greatly influence research in areas such as:
- clinical interventions
- drug development
- lab/computer-based research
- holistic care
- Policy development
'We create an open conversation between researchers and patients to help build trust and confidence in research. In this way, we can be certain the research we're working on is relevant and needed by patients. And that is it carried out with integrity.'
Dr Pauline McCormack