Why become a member?
Genetic Alliance UK is an alliance of charities and support groups working together to improve the lives of 3.5 million people in the UK living with lifelong and complex genetic and rare conditions.
Our members and the people living with genetic and rare conditions that they support are at the heart of everything we do. We listen to one another’s experience, learn from one another’s expertise and help our members to share knowledge with each other.
Join us in our mission to improve the lives of people across the UK living with genetic and rare conditions.
By being a member of Genetic Alliance UK, you are joining a robust, resilient and flourishing alliance and there are many benefits to your organisation joining our network.
- Amplify the diverse voices of people living with rare and genetic conditions, as our collective voice is stronger when we work together
- Benefit from our close working relationships with key officials, including civil servants at the Departments of Health in the four nations, senior decision-makers within the NHSs of the UK, and senior staff at arms length bodies like National Institute for Health and Care Excellence (NICE), Scottish Medicines Consortium (SMC), Welsh Health Specialised Services Committee (WHSSC), Genomics England, the UK National Screening Committee and others
- Increase your impact through our policy team’s support responding to consultations and engagement opportunities with health authorities
- Connect with Parliamentarians through the All Party Parliamentary Group (APPG) in England and Cross Party Groups (CPG) in Wales and Scotland on Rare, Genetic and Undiagnosed Conditions for which we provide the secretariats
- Receive regular Parliamentary monitoring updates to keep you informed on relevant legislation and debates across the devolved nations
- Multiple opportunities every month to engage directly with your peers working at other member organisations through our virtual Member Meetings
- Connect directly with our network as a member of our growing private Facebook group, where you can share your events and information and post queries to get tips and ideas from other members
- Receive Member News, our regular digital digest of news, updates and opportunities from the genetic and rare community
- Establish valuable connections with people and organisations in our member network via facilitated introductions
- Access patient engagement opportunities to share your voice and shape policy development and research across genetic, rare and undiagnosed conditions
- Draw on the skills and knowledge of our staff team who have extensive experience of public affairs, policy, research, communications, engagement and fundraising
- Extend your reach by tapping into our communication channels and amplifying awareness of your organisation’s events and activities
- As a member, a link to your organisation’s webpage will appear on our website which is a go-to resource for stakeholders, industry and the public when looking for information, collaborators or potential recipients of funding
- As a member, you will have voting rights at our AGM and be able to nominate trustees to sit on our Board. Your organisation can play a direct role in the governance and strategic direction of Genetic Alliance UK
Whether you are a small organisation run by two people or a much larger organisation run by many, we can help you in delivering your objectives to better advocate and support those you represent.
