Rare Disease UK is an alliance of key stakeholders brought together to develop strategic planning for rare diseases in the UK

It is a joint initiative of Genetic Alliance UK  (the national charity of over 130 patient organisations supporting all those affected by genetic disorders) and others in response to unmet health care needs of hundreds and thousands of families who currently struggle to get access to integrated care and support from the NHS.

It will help ensure the efficient use of scarce expertise, and the targeted use of health care resources to maximise the benefits for all patients and families affected by rare disease across the UK.

A strategy should coordinate:

• Research into rare diseases
• Prevention and diagnosis of rare diseases
• Treatment of rare diseases
• Information on rare diseases for patients and the public
• Commissioning and planning for rare diseases
• Care and support for rare disease patients

into a coherent strategy to develop and strengthen care and support for those affected by rare diseases in the UK. Much progress has been made in this field in the past decade, with innovative commissioning strategies and the establishment of centres of excellence delivering multidisciplinary care. 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 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's Key Messages

Rare Disease UK's Business Case for the development of a strategy (England)

Rare Disease UK's Business Case for the development of a strategy (Scotland)

Rare Disease UK's Business Case for the development of a strategy (Wales)

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