Summary of work
Imagine someone you love living with a rare disease. We know he or she doesn’t want to be defined as a ‘patient’, but as a person. That’s where CRDN started – with people. We wanted to get them empowered to change the rare disease landscape. In the way people think, in the way they act, and in how the community connects, advances research and finds cures.
More than a meeting, RAREfest was the first of its kind. A powerful movement bringing together passionate and inspirational people, the festival vibe cascaded beyond walls into local schools, halls and communities. We connected children, parents, artists, charities, scientists, doctors, social enterprises and business executives to achieve two key aims:
- Take people on the rare disease journey and connect them to the impact of what it means
- Create a movement for action to find more treatments, more services and more support.
The RAREfest two-day event became a platform for raising awareness, promoting understanding and providing practical support. Nearly 1,000 people came together and over 20 start-up collaborations emerged, connecting biopharma, academia and the community to bring about better outcomes.
RAREfest imagined that change was possible and started the journey to connect entire communities in rare diseases.
This initiative captures the spirit of the Communiqué Awards. It was a fun event that was delivered to a high standard and most importantly, it was effective in raising awareness of rare diseases. The corporate sponsors were impressive, and we were blown away by the year on year improvements.