News & Events

Quarterly Policy Roundup, April 2019

Last Reviewed 3/04/2019


30/4/19 12:00 - 30/4/19 12:45



Join Genetic Alliance UK’s policy team on April 30, 12:00-12:45, for a roundup webinar of the key policy areas that affect the rare, genetic and undiagnosed community. This is an exclusive opportunity for members to ask questions and feed into our policy work.

In this webinar, we will cover two areas:

  • UK Strategy for Rare Diseases
    Members will be aware that our campaign Rare Disease UK is calling for a review and refresh of the UK Strategy for Rare Diseases before the end of 2020. We’ll provide an update on our work to ensure that patients and families play an integral role in developing future plans to meet the needs of all those living with rare diseases.
  • Parliamentary Groups on Rare, Genetic and Undiagnosed Conditions
    We’ll update members about the work of both the All Party Parliamentary Group and Cross Party Group on Rare, Genetic and Undiagnosed Conditions in Scotland.

If you would like to join us, please complete the relevant survey below, including any questions you would like to see answered on the above topics. This webinar is for Genetic Alliance UK members only.

Join our alliance of 200+ patient charities

Join us