Benefits of membership

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 Parliamentarians in the devolved nations of the UK, civil servants at the Departments of Health, senior decision-makers within the NHS, 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 access to consultations and engagement opportunities through our Policy team as well as secretariat access to the All Party Parliamentary Group (APPG) in England and Cross Party Groups (CPG) in Wales and Scotland on Rare, Genetic and Undiagnosed Conditions
  • Receive fortnightly Parliamentary monitoring updates to keep you up to date with 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 Briefings and Member Brews
  • 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 fortnightly 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.

Don’t just take our word for it – here’s what our members say about us. 
Stephen White, Jo Milne and family. They are all outside, Jo holds on child balanaved on her knee while crouching, Another young boy pulls a funny face wearing blue glasses. Steve takes the photo as a selfie. They all wear big warm coats as if it is a cold day.

Genetic Alliance UK invites and empowers us all to take our own agendas, our own considered concerns for those we represent to places that we might not have been able to reach on our own. One passionate voice, anchored in authenticity and patient centricity clearly, has meaning – many voices anchored by the same spirit has a power and an insistence that is unified, disruptive and made for change.

Steve White, Vice Chair and Trustee, CUREUsher

Genetic Alliance UK represents the needs of all those in the UK affected by rare conditions in the ‘corridors of power’ and allows those small groups to access this level of government.

Genetic Alliance UK member
Matthew Carr, Strategic Lead – Campaigning, Influencing and Policy at Retina UK. He is speaking at an event standing in front of a small microphone. He looks over the side and smile. Behind you can see Retina UK boards and information, he also wears a navy blue Retina UK polo shirt.

At Retina UK, one of our core values is ‘collaborative’. This value sits hand in hand with the way in which Genetic Alliance UK works with its members. With regular newsletter briefings sharing information across the rare, genetic and undiagnosed conditions space, having the opportunity to showcase the work of our charity in a Member Brew or even taking over their social media feeds for a day, enables us to fulfil our collaborative value.

Matthew Carr, Strategic Lead – Campaigning, Influencing and Policy, Retina UK

Apply now

or contact us via [email protected] for further information on membership of Genetic Alliance UK

Become a member