News & Events

BARONESS BLACKWOOD SEEKS YOUR VIEWS ON LIVING WITH A RARE DISEASE

Last Reviewed 16/10/2019

By Rosie McCallum

Speaking at Genetic Alliance UK’s Annual Conference, our keynote speaker, Baroness Nicola Blackwood, has announced a national survey into the major barriers faced by those living or working with rare disease.  The Government is collecting the views of patients, healthcare professionals and industry in order to inform the rare disease framework that will be developed in preparation for the end of the UK Strategy for Rare Diseases in 2020.

Welcoming the announcement, our Chief Executive Jayne Spink said: “With the end of the UK Strategy drawing near, the commencement of work to inform a rare disease framework is extremely welcome. This is an early and important opportunity to make sure the views and experiences of people affected by rare diseases are heard at the start of the process.”

The survey, which will take between 10 to 20 minutes to complete, is now open and will close on 29 November 2019. Click on the following link to take part.

Take part in the survey
Baroness Blackwood announcing the launch of the survey at our annual conference.

Join our alliance of 200+ patient charities

Join us