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Niamh's Journey

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 the Genetic Interest Group (the UK alliance of patient organisations with a membership of over 130 charities which support children, families and individuals 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.