Joining Raremap: Frequently asked questions

Q1. What are the criteria for including an organisation in Raremap? 

1. Rare disease relevance  
   The organisation must have a clear and identifiable focus, capability, service, programme, partnership, expertise, or activity that is related to rare diseases.
2. UK ecosystem relevance 
   The organisation should either be: 
   i) UK-based, 
   ii) actively operating within the UK,
   iii) or connected to, supporting, or collaborating with the UK rare disease ecosystem.  
3. Clear user value 
   The organisation should be able to help Raremap users to:  
   i) identify relevant expertise, services or partners, 
   ii) understand and navigate the rare disease landscape, 
   iii) access support, infrastructure, research capability or funding opportunities,
   iiii) or establish collaborations and connections. 
4. Strategic fit 
   The organisation should align with the current purpose and scope of Raremap and fit appropriately within an existing category or organisational type.  

If an organisation sits outside the current scope or functionality of the platform, inclusion may be deferred until future development of Raremap supports that use case. 

Q2. What if my organisation doesn’t fit neatly in the current scope of Raremap? 

If your organisation applies to join Raremap, and your application is considered a borderline fit, you may be asked to provide additional information, such as:  

• examples of rare disease-focused activities or programmes; 
• evidence of disease-specific expertise;  
• details of partnerships, networks or services supporting the rare disease community;  
• evidence of relevance to the UK rare disease ecosystem. 

Raremap is just at the beginning of its journey – we plan to develop and expand Raremap over time, with the help of the rare disease community. As Raremap evolves, organisations that do not currently fit into the criteria of Raremap may be reconsidered at a later stage if new functionalities or categories are introduced.