Rare Disease Priority Setting Partnerships (360G-Wellcome-208561_Z_17_Z)

£60,000

We will engage rare disease patients/carers and clinicians to identify their research priorities, in order to influence the research agenda in a way that benefits patients: we will use the established and esteemed James Lind Alliance model of Priority Setting Partnerships (PSPs), administering two PSPs for groups of related diseases. Selection of the disease areas will be made following consultation with our membership, ensuring that the project is democratic and is driven by motivated patient groups. Wellcome Trust funding will allow economies of scale through running two simultaneous PSPs, and will enable very small patient groups with restricted resources to participate. We will make the process as accessible as possible: for example, delivering surveys in accessible formats; and will facilitate the involvement of teenagers and young people. Our membership is highly motivated to take part in research - together with our own experience in steering two existing rare disease PSPs, and our policy and public affairs expertise, we are in a strong position to facilitate successful PSPs that will influence research funding and policy for the benefit of rare disease patients. By disseminating learning from the process we hope to support the establishment of further successful PSPs for rare diseases.

Where is this data from?

This data was originally published by The Wellcome Trust. If you see something about your organisation or the funding it has received on this page that doesn't look right you can submit a grantee amendment request. You can hover over codes from standard codelists to see the user-friendly name provided by 360Giving.

Grant Details

Amount Awarded 60000
Applicant Surname Hunter
Approval Committee Public Engagement Fund (Small Awards) Committee
Award Date 2017-09-30T00:00:00+00:00
Financial Year 2016/17
Grant Programme: Title Public Engagement Fund Small
Internal ID 208561/Z/17/Z
Lead Applicant Dr Amy Hunter
Partnership Value 60000
Planned Dates: End Date 2020-04-30T00:00:00+00:00
Planned Dates: Start Date 2017-11-01T00:00:00+00:00
Recipient Org: Country United Kingdom
Region Greater London