We are moving!

Date: 21 Jul, 2017  No Comments  ASUK Author

From the 24th July 2017 the charities registered office address will change to: 4 St Kitts Close Torquay Devon TQ2 7GD During this time the current office telephone number 01803 613117 will not work so please dial 01709 210151 for all enquiries. If your enquiry is urgent please call 07970 071675

Breaking down Barriers website launched

Date: 17 Jul, 2017  No Comments  ASUK Author

Breaking down Barriers, website has launched! Developing supportive and inclusive services for individuals and families affected by genetic conditions. Have a look at the new website to find out more about this project and the fantastic work being achieved.

Generation Genome Report Launched

Date: 11 Jul, 2017  No Comments  ASUK Author

Chief Medical Officer, Professor Dame Sally Davies’s has finalised an independent report to the government as she looks at the role of genomics. In particular how genomics may have the potential to improve health and prevent ill-health. The report discusses the current genomic provision in the NHS and looks in greater detail at the screening

Shades for Sight campaign

Date: 28 Jun, 2017  No Comments  ASUK Author

The 27th June 2017 marks National Sunglasses Day To highlight the importance of wearing sunglasses; RNIB asked everyone to support the campaign ‘Shades for Sight’ by posting a selfie of themselves in their sunglasses. Sunglasses protect your eyes, so remember to wear them 😎   Team at ASUK, even our furry friends are getting in on the

Rare Disease UK, new project for young people

Date: 26 Jun, 2017  No Comments  ASUK Author

Rare Disease UK are coordinating a new project to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition. “This project will use a range of flexible and fun activities to engage with patients aged 5-17 and their siblings. These activities will take place at events coordinated

EURORDIS: access to medicines for all

Date: 15 May, 2017  No Comments  ASUK Author

EURORDIS has published their position on early access to medicines in Europe; arguing for compassionate use to become a reality so patients in urgent need get the help and treatments needed. Currently many medicines take far too long to develop which for many rare and complex conditions these medical interventions are needed now. A compassionate