LifeArc and Rare Disease Research UK (RDR UK) have announced the launch of Raremap, a new online directory designed to improve collaboration across the UK’s rare disease sector by helping organisations identify expertise, build partnerships and navigate the complex research landscape
Developed as a community-powered platform, Raremap will bring together organisations spanning research, clinical care, patient advocacy, funding and industry into a single searchable directory
The initiative aims to make it easier for stakeholders to find relevant expertise, understand how different organisations fit within the wider ecosystem and identify opportunities for collaboration that could accelerate the development of new rare disease therapies
The launch comes as collaboration is increasingly recognised as a critical factor in advancing rare disease research
With more than 7000 rare diseases identified worldwide and many affecting only small patient populations, partnerships among academia, healthcare providers, charities, biotechnology companies and pharmaceutical manufacturers are often essential to overcoming fragmented research efforts and advancing treatments into clinical development
SamBarrell, CEO of LifeArc, said the platform was designed to make collaboration more accessible
“Progress in rare diseases depends on people sharing expertise and working together,” she said
Raremap helps build a more connected ecosystem, making it easier to share expertise and identify opportunities that might otherwise be missed
“By working together, we can help create the partnerships that accelerate research and ultimately deliver more treatments to the people who need them.”
Prof. Dave Jones, RDR UK Hub Lead at Newcastle University, added that no single organisation can solve the challenges associated with rare diseases alone
Researchers, clinicians, charities, patient groups, funders and industry all have an important role to play, but collaboration starts with knowing who is out there
LifeArc and RDR UK are encouraging organisations working across the rare disease sector to registerwithRaremap, verify existing listings and provide feedback as the platform evolves
The organisations also envision expanding the directory internationally over time, with the long-term goal of establishing Raremap as a trusted global re
