Cambridge Rare DiseaseNetwork (CamRARE)

Cambridge Rare Disease Network (CamRARE) is a registered Charitable Incorporated Organisation founded in 2015 to address the unmet needs of the 3.5 million people in the UK living with rare and undiagnosed conditions. While these conditions are “individually rare,” they are “collectively common,” affecting 1 in 17 people. We bring together patients, families, researchers, clinicians, and industry to drive better diagnosis, care, treatment and inclusion for those affected. CamRARE is the co-founder and owner of the Rare Disease Research Network platform (www.rd-rn.org) – an online space for patient-driven research ideas to flourish and the Rare Patient Passport (https://www.camraredisease.org/rare-patient-passport/).
OUR VISION: A world where everyone affected by a rare condition feels connected, empowered, and supported – driving progress through shared knowledge, inclusive research, and a thriving, resilient community
OUR MISSION: Making life with a rare condition easier – through connection, collaboration, and community