Cambridge initiative to drive rare disease strategy

Cambridge Rare Disease Network (CRDN) is launching a company forum to bring together stakeholders from across the rare disease community to discuss and tackle some of the biggest challenges facing industry.

By encouraging patients and industry in the rare disease community to collaborate more closely, the forum seeks to raise awareness of the barriers and bottlenecks preventing the development of new treatments and technologies.

The forum intends to initially address two key issues. Firstly, balancing collaboration and healthy competition in developing treatments. Secondly, to address the issue of funding, the possible creation of a UK Rare Disease Fund that pharmaceutical companies and government could contribute to.

The first meeting is due to take place on October 20 and will be led by CRDN chair Alastair Kent (pictured). Guest speaker Dr Jordi Llinares, is head of scientific and regulatory management at the human medicine evaluation division of the European Medicine Agency. 

Cambridge Rare Disease Network was established in 2015 to build a community of people in Cambridge to address the unmet needs in rare disease research and treatment. 

The trustees include some of the UK’s foremost experts in rare diseases, and founding members come from diverse backgrounds in academia, business, healthcare and patient support networks.