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1 in 17 people will develop a rare disease at some point in their lives.

RAREfest20 is a global, virtual festival that puts rare diseases into the spotlight!


Despite the fact rare diseases affect one in seventeen 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. We are proud to be media partners for this important event in the rare disease calendar.

RAREfest20 is a rare disease inspired 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 November 28th, this 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 mix and mingle 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.
  • 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

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 RAREfest20 website. Tickets are free and available through the platform.

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covid-19 / Rare Diseases