Quarterly Policy Webinar – April 2019

On April 30 2019, members joined Genetic Alliance UK’s policy team for a roundup webinar of the key policy areas that affect the rare, genetic and undiagnosed community. These webinars occur quarterly and are an exclusive opportunity for members to ask questions and feed into our policy work.

In this webinar, we covered:

• 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 provided 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 updated members about the work of both the All Party Parliamentary Group and Cross Party Group on Rare, Genetic and Undiagnosed Conditions in Scotland.