Although rare diseases are individually infrequent, one in 17 people will be affected by rare disease at some point in their life. This equates to nearly one million children in the UK and Ireland.
The objective of the Rare Disease Development Fund is to support research and surveillance projects and to help develop and deliver education and training programmes on rare disease and rare complications - all with the aim of improving health outcomes for children and young people affected by rare diseases.
However, funding sources are a challenge to locate, especially for basic disease research such as epidemiology, diagnostics, and service evaluation. Through targeted funding in these areas, there is the potential to speed diagnosis and contribute to improving service delivery and public health policy changes. This will improve the lives of children and families affected by rare disease for which living with such conditions has a large emotional, financial and social impact.
The Rare Disease Development Fund will facilitate the development of:
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Research fellowships For paediatricians to carry out translational or basic science research, such as surveillance studies through the British Paediatric Surveillance Unit (BPSU) |
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Grants and bursaries Grants or BPSU-approved studies on rare diseases that affect children and that address a question of clinical or public health importance Bursaries for child health professionals (paediatric trainees, academic trainees, new consultants, allied health professionals) to support attendance at training courses, conferences or events to present data |
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Education and training Development and delivery of programmes to support the paediatric workforce to better provide services for children and young people with rare diseases, including face-to-face and online courses in collaboration with BPSU |
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Patient resources Development and dissemination of patient resources in collaboration with Rare Disease UK, RCPCH &Us and other stakeholders and patient groups |
We invite you to be a part of this vision to influence the future of childhood rare disease research, and the health outcomes for children and young people affected by them.
There are several ways you can donate to support our work in rare disease research. Every donation helps, and we thank you! Find out more here.
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