Why strategic planning is required...

“One of our members told us that her husband had struggled for years to get a diagnosis of Behçets and had been passed from Consultant to Consultant – no one seemed to know what he had or how to treat him. His wife had to give up work to look after him, they had to give up their house and he died in 2006 aged just 34 years.” – patient, Behçets Syndrome Society

Currently people affected by rare disease do not have a coherent strategy for care and support. Many individuals have difficulties accessing high quality care and services, in many cases due to the lack of communication and coordination of services that are sometimes already in existence. Due to the rarity of many conditions health professionals often have little or no experience in supporting patients in order to find optimum care pathways which can often be difficult or impossible.

Developing strategic planning for rare diseases will improve the current fragmentation of services and enable patients and health professionals to provide and use best practice care. Much progress has been made in the field in this past decade, with innovative commissioning strategies and the establishment of centres of excellence delivering multidisciplinary care for some conditions. Rare Disease UK plans to build on the existing infrastructure and expertise and foster information sharing between disciplines.

This initiative will build upon the European Council's Recommendation on an action in the field of rare diseases, which was adopted unanimously by EU Health Ministers, stressing the importance of strengthening research programmes into rare disease, encouraging the development of national rare disease policies, and developing and sharing common policy guidelines such as access to good quality information.

Rare Disease UK is aiming to work in partnership with government, both national and devolved, and colleagues in the NHS across all four home nations to develop and implement an effective strategy for integrated service delivery. We have set up five Working Groups of expert stakeholders to look into the issues that a national strategy will need to address and to develop a set of measures to ensure the effectiveness of a strategy in the UK. An effective strategy will bring together research into all aspects of rare disease, prevention and diagnosis of rare disease, best practice in the treatment of rare disease, and the dissemination of information on rare disease to the public, patients and professionals. We aim to ensure that the commitment expressed by adopting the Recommendation is now acted upon and that a real difference is made to the lives of the millions of patients living with rare disease.

Rare Disease UK's Key Messages 

Rare Disease UK's Business Case for the development of strategic planning (England)

Rare Disease UK's Business Case for the development of strategic planning (Scotland)

Rare Disease UK's Business Case for the development of strategic planning (Wales)

Rare Disease UK's Business Case for the development of strategic planning (N.Ireland)

Rare Disease UK is currently growing fast, in the coming months strategies will have been decided. More information and detail will be announced soon. To be kept updated, make sure you join us and be added to our mailing list.