In the UK Rare Disease Day is being coordinated by the Genetic Interest Group the UK alliance for all people affected by genetic conditions and Rare Disease UK a multi stakeholder group brought together to develop strategic planning for rare diseases in the UK. You can find out more about both organisations work by clicking on the links above.

Rare diseases affected over 3.5 million people in the UK, that is 1 in 17 people.  Collectively rare diseases are not rare at all, however NHS services remain patchy and poorly integrated meaning that families often struggle to get the support and information that they need.

Rare Disease UK and the Genetic Interest Group are working together to develop plans and strategies to help those living with rare disease and those that provide services and information for families affected by rare conditions.

In the UK we will be hosting three parliamentary receptions in Scotland, Wales and Northern Ireland.  Details will shortly be added to the events page.

If you are in the UK and would like to participate in Rare Disease Day please do let us know so we can ensure that we try to publicise as many events as possible. Please contact either Melissa Hillier melissa@gig.org.uk or Stephen Nutt stephen@gig.org.uk