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Partners and Collaborators in the Centre for Rare Disease Studies

Based within the Institute of Translational Medicine, Centre for Rare Disease Studies is working in partnership with the Centre for Rare Disease and the Children’s Rare Disease Centre, together with our partner hospitals and the University Âé¶¹¾«Ñ¡, to pioneer advances in rare disease research.

Partners

– The Centre sees over 9,000 children who have a rare disease from across the UK. Because of the team’s experience and expertise in treating children, and BCH's status as a leading paediatric centre, the government also provides funding for 11 nationally commissioned services, which encompass the care of very rare diseases. This means the team can treat children and young people with these conditions from all over the country and have fully funded multidisciplinary care for these services.

(CfRD) – The focus is for highly organised one-stop clinics where patients (with their carers) undergo pre-planned diagnostic tests and see all relevant specialists and the multi-disciplinary team at one visit at UHBFT as the hub of their care.

Our partner hospitals

Birmingham Health Partners

  • Birmingham Health Partners is a strategic alliance between the University Âé¶¹¾«Ñ¡ and two NHS Foundation Trusts – Birmingham Women’s & Children’s, and University Hospitals Birmingham – where members collaborate to bring healthcare innovations through to clinical application. Read the Birmingham Health Partners 2017 partnership document.

Collaborators and specialist partners

Rare disease charities and research funders include:

  • Findacure

Industry associations

  • Association of the British Pharmaceutical Industry LINC (Library of Initiatives for Novel Collaborations) database - a repository for academic researchers to search for open opportunities for collaboration with the biopharmaceutical industry.

Relevant guidance includes: