Imagine finding out that you have a disease that affects only one person in the country.
On 23rd September, Rick and Mary Rose attended Cambridge Rare Disease Network’s RAREsummit at the Wellcome Genome Campus in Hinxton.
This weekend Patient Worthy attended RAREfest, an event held in the UK by the Cambridge Rare Disease Network. It brings together patients and their families, researchers, doctors, and the public to engage with rare disease issues.
This weekend Patient Worthy attended RAREfest, an event being held in the UK by the Cambridge Rare Disease Network to raise awareness and promote discussion around rare disease issues.
In supporting RAREfest 2018, the ‘first-of-its-kind’ rare disease-inspired festival in Cambridge, we helped to shine a light on innovations that aim to address the challenges. The Cambridge Rare Disease Network (CRDN) brought together stakeholders in the rare disease community and the region’s public to raise awareness of rare conditions and to showcase innovative solutions.
It’s 2018 and rare diseases are still not being consistently diagnosed, treated and supported effectively. Free to attend, this 2-day festival will shine a light on some successes and innovative solutions that are striving to address this.