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Member Briefing

Exclusive to Genetic Alliance UK members and hosted by senior staff, you won’t want to miss our insightful and impactful Member Briefings. On the first Tuesday of every month, we welcome key stakeholders in the health, policy and charity sectors to discuss shared challenges in genetic, rare and undiagnosed conditions.

Exclusive to Genetic Alliance UK members and hosted by senior staff, you won’t want to miss our insightful and impactful Member Briefings. On the first Tuesday of every month, we welcome key stakeholders in the health, policy and charity sectors to discuss shared challenges in genetic, rare and undiagnosed conditions.

Invited speakers and panellists at Genetic Alliance UK Member Briefings include:

  • Senior representatives from the NHS
  • UK Government members
  • Other key leaders and policymakers

With presentations and discussion on a different critical topic every month, previous Briefings have included:

  • Senior staff from NHS England’s Specialised Commissioning Team and an Integrated Care Board (ICB) briefing members on changes to the commissioning of some specialised services and clarifying new commissioning responsibilities
  • NICE (National Institute for Health and Care Excellence) Public Involvement Programme and Managed Access senior staff discussing how NICE can best help smaller charities (including our member organisations) contribute to its work.
  • EURORDIS Rare Barometer Programme Senior Manager sharing the findings from their international surveys on diagnosis for rare conditions and the newborn screening survey.
  • Genomics England setting out how the Newborn Genomes Programme list of conditions was selected, how it may be updated and next steps for the Programme followed by a Q & A session for members