Help establish Cross Party Groups for Genetic, Rare and Undiagnosed Conditions in Scotland and Wales

Devolved nation elections were held in Scotland and Wales on 7 May 2026. You can read more about the election results in Scotland on the Scottish Parliament website and read about the election results in Wales on The Senedd’s website.

As the new Governments form in each country, Genetic Alliance UK is starting to reach out to members of each parliament for their support to join a Cross-Party Group (CPG) on Genetic, Rare and Undiagnosed Conditions.

What are Cross-Party Groups?

Cross-Party Groups (CPG’s)are formal groups within parliaments that bring together politicians from across different political parties. They can also include support organisations, clinicians, individuals with lived experience and other stakeholders with an interest. They provide a forum where people with lived experience can directly engage with decision-makers to discuss specific issues and inform and influence policy.

What do they want to achieve?

The purpose of CPGs is to ensure that the voices of the genetic, rare, and undiagnosed community are heard at the very heart of government. The CPGs will focus on driving meaningful, lasting policy change by holding governments to account on five key priorities:

• Faster diagnosis through expanded newborn screening and wider access to genetic testing.

• Equitable access to specialist care and commissioning reform.

• Better access to treatments by encouraging research investment and faster therapy approval.

• Coordinated care to seamlessly support patients throughout their healthcare journey.

• Achieving a bold new framework to succeed the UK Rare Diseases Framework.

Why are they necessary for rare conditions?

Individually, rare conditions affect small numbers of people, meaning they are often overlooked in broader healthcare planning. Collectively, however, they affect 3.5 million people across the UK. Because the challenges, such as the long diagnostic odyssey and lack of specialist treatment are so similar across different rare diseases, a dedicated parliamentary group is essential. It ensures these shared challenges receive the focused attention, expertise, and political will required to fix them.

How you can help

We need your help to ensure that as many Members of the Scottish Parliament (MSPs) and Members of the Senedd (MSs) as possible join these groups. Contacting your local representative is one of the most effective ways to put rare conditions on their agenda. You can do this in 6 easy steps: 

• Find your representative: 

1. 1. • If you live in Scotland, you have one constituency Member of the Scottish Parliament (MSP) and seven regional MSPs, and you can email or write to any or all of them. You can find out the names of your elected representatives and how to contact them by entering your postcode on the Scottish Parliament website.
      • If you live in Wales, you are represented by six Members of the Senedd (MSs) for your region. You can email or write to any or all of them. You can find out the names of your elected representatives and how to contact them by entering your postcode on The Senedd website. 

• Introduce yourself and your story: Politicians respond best to personal stories from their own constituents. Start by stating that you live in their constituency or region. Briefly explain your connection to genetic, rare, or undiagnosed conditions, and the everyday challenges you or your family face. Tell them what you would like to see change. 

• State ‘the ask’ clearly: Explain that Genetic Alliance UK is working to re-establish the Cross-Party Group on Genetic, Rare and Undiagnosed Conditions. Explicitly ask them if they will commit to joining the group and attending its meetings to support constituents like you.

• Share the priorities: You can mention that the group will be focusing on crucial improvements to healthcare, such as faster diagnosis, coordinated care, and better access to specialist treatments.

• Keep it concise and polite: A concise email of three or four paragraphs is usually most effective. Always include your full name and address, including your postcode, so they can verify that you are a constituent. Thank them for their time and ask them to reply to let you know if they will support the group.

• Let Genetic Alliance UK know: Please let Genetic Alliance UK know if you have contacted your local representative, or if you receive a response from them, by emailing [email protected]. When we follow up with politicians, it is incredibly helpful for our team to know that they already have supportive constituents engaging with them on these vital issues. 

Want to know more about our work in Parliament? Email [email protected]