LifeArc has collaborated with Rare Disease Research UK to launch Raremap, the UK’s first directory of rare disease organisations.  

There’s a vibrant and diverse ecosystem of organisations working to improve outcomes for people affected by rare conditions. Patient groups, charities, researchers, funders, healthcare organisations, government bodies and biotechnology companies all play important roles in advancing tests, treatments and care.  

However, the rare disease landscape can be difficult to navigate. Finding the right organisation, understanding who does what, and identifying potential collaborators is not always straightforward.  

Raremap was created to help address this challenge by bringing together organisations in one place to make these roles and connections easier to understand. 

Bringing together the rare disease community 

Raremap is a searchable directory designed to help people explore all of the organisations and expertise that exist across the rare disease community.  

Maybe you’re a researcher looking for funding, or a patient organisation seeking new connections. Perhaps you’re looking to better understand regulatory processes. Raremap provides a single place to discover organisations working in different areas and better understand how they all contribute. 

What can you do on Raremap?

Through Raremap, you can:

• search and discover rare disease organisations working in the UK and beyond 
• browse organisations by category and function 
• explore how organisations connect and interact 
• request to add your own organisation 

A resource designed to grow 

We’ve developed Raremap as a living resource that will evolve over time.  

As more organisations join the directory, it will become an increasingly valuable tool for understanding the landscape, identifying opportunities and building connections.  

We want to make Raremap as useful as possible to the rare disease community, so we welcome feedback to help inform future improvements and enhancements.  

Is your organisation missing? 

We’re keen for Raremap to reflect the breadth and diversity of the rare disease community.  

If your organisation works in rare diseases and is not yet included in the directory, you can request to be added through the website. By joining, you’ll help build a more complete picture of the ecosystem and make it easier for others to navigate and find new connections and opportunities for collaboration.