Member Meetings
Exclusive to Genetic Alliance UK members and hosted by senior staff, you won’t want to miss our insightful and impactful Member Meetings. 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 Meetings include:
- Representatives from our member organisations
- Senior staff from the NHS
- UK Government members
- Other key leaders and policymakers
With presentations and discussion on different critical topics every month, previous Meetings 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
The last 30 minutes of Member Meetings are an informal opportunity for our members to talk and share resources, challenges, introduce themselves and their organisations to our member network, make connections and identify possible collaborations.
Registration links for Member Meetings (as well as slide decks and other resources shared at previous meetings) are shared exclusively with members via our monthly digital newsletter, Member News.
Genetic Alliance UK memberGenetic Alliance UK’s Member Meetings (regular meetings for charities focused on the genetic, rare and undiagnosed communities) are always incredibly helpful. They provide a knowledgeable, warm and welcoming space that encourages networking, learning and support. A key benefit of Genetic Alliance UK’s Member Meetings is that they’re open to charities of all sizes, which means that all groups – from tiny two-person organisations to household name charities – get to thrive together. Ultimately, Genetic Alliance UK’s Member Meetings help all charities to fulfil their aims and objectives, thereby improving the lives of communities in the genetic, rare and undiagnosed space.
Registration links for Member Meetings are shared with members via our fortnightly digital newsletter, Member News.
