UKRI-2310 Hub Function for the UK Rare Disease Research Platform

Tender description

The UK Rare Disease Research Platform (UK-RDRP) is being established by MRC and NIHR to connect and enhance the UK’s strengths in rare disease research. Rare diseases are defined as diseases with a prevalence of less than one in 2000 individuals, and include disease of genetic and non-genetic origins. The aim of the Platform is to underpin greater collaboration between academic, clinical and industry research with essential patients, research charities and other stakeholders to accelerate the understanding, diagnosis and therapy of rare diseases. The Platform will support networking and activities that enable research and will comprise a number of challenge-led thematic nodes (each led by UK research organisations, e.g. universities), with a single, integrated platform Hub. Lot 1: This procurement exercise will commission a Hub function for the UK-RDRP, with following objectives: •Coordinate and bring cohesion to the Platform •Establish and maintain a website, mailing lists and social media presence for the Platform •Provide a point of contact for external stakeholders •Administer the Platform. The Hub will support a set of around 10 -12 nodes (each of which will do networking and enabling science within a specified subset of rare disease research (a ‘domain’)) as well as providing a broad service to all UK rare disease research interests. The Nodes, Hub and all stakeholders and related interests will collectively form the Platform (the UK-RDRP). The nodes will be funded via an open call, launching in August 2022 with decisions in March 2023 and nodes starting work in May-June 2023. The Platform is co-funded by MRC and NIHR, following MRC processes unless stated otherwise. The Platform is one of the activities that will support the national Rare Disease Framework, in particular the ‘pioneering research’ theme The Platform will be managed by a Platform Executive Board (including the funders, node directors, stakeholders and independent members).