RAREfest20: Global, virtual festival puts rare diseases into the spotlight


14-10-2020
RAREfest 2020 banner

Despite the fact rare diseases affect one in 17 people, those affected tell Cambridge Rare Disease Network they’ve been all but forgotten during the last six months of the COVID-19 pandemic. With this in mind, CRDN is making it their priority to push rare diseases into the spotlight. Cambridge Network is proud to be media partner for this important event in the rare disease calendar.

RAREfest20 is a rare disease inspire virtual, global festival that will spark curiosity, challenge perceptions, showcase science, inspire innovation and give a voice to rare disease patients and their families. Taking place on Saturday November 28th, the free event for the experts and the curious of all ages promises a feast of excellent speakers, exhibitors, films, expert talks and patient voices - a great opportunity to connect with the rare disease community through live Q&A and chat rooms.

Speaker highlights include:

  • Onno Faber - Rare disease patient, tech guru, entrepreneur and keynote speaker. Founder of All Stripes (formerly) RDMD, helping rare disease communities unlock important research data.

  • Giles Yeo - Dr Giles Yeo studies obesity. He was at the forefront of research that showed when a number of genes mutated, severe obesity was the result. For RAREfest20 he talks genetics, obesity and how research into rare conditions provides a universal pathway into understanding common conditions. Dr Yeo, Principal Research Associate at the University of Cambridge Metabolic Research Laboratories and MRC Metabolic Diseases Unit, was made MBE for services to research and communication and engagement in the Queen's Birthday Honours 2020.

  • Illumina and Same but Different - ‘Illumina’ is a world leader in next-generation sequencing. ‘Same but Different’ uses the arts for positive social change. Together they will present ‘The Journey of Hope: Exploring the diagnostic odyssey’.

  • Cookies4Cures - US based mum and daughter team bake cookies to help fund research into rare paediatric diseases. Cookies baked: Almost 16,000. Money raised: Over $100,000!

  • Rare Youth Revolution - A dedicated news platform for young people to access relevant contented about rare diseases. For RAREfest20, the teams will lead a workshop and quiz

CRDN adds “For the rare disease community, going online makes this festival even more accessible. Those who’ve been shielding can be there. Those who might struggle with travel to a physical event can join in. Those whose medical needs might prevent them attending can engage and take part. Not only this, but taking RAREfest20 online allows it to be a truly global event where anyone in the world can attend!”

For more information visit the festival website. Tickets are free and available through the platform.

 

Cambridge Rare Disease Network links patients, professionals and industry working with rare diseases through our annual rare disease summit, educational events and regional patient group development.

Cambridge Rare Disease Network