RAREfest20, a scientific, educational and community-centric event, went virtual this year, providing a vast jamboree of opportunities and insights for a community that is burgeoning as no other – and demonstrating that its sharing, multi-disciplinary networking format works perfectly well online.
RAREfest20 takes place virtually this year, as the successful event organised by Cambridge Rare Disease Network (CRDN) adapts the format – a place where researchers, sufferers, families and patient groups can meet and share information and stories – to the internet.
The impact of discovering your child suffers from a rare disease cannot be underestimated – and Tom Almeroth-Williams makes no attempt to gloss over the moment he and his partner Hélène were told their daughter, Julia, has Wolf-Hirschhorn Syndrome.
The COVID-19 pandemic has altered the lives of just about everyone, especially patients in receiving continued treatment and care. But what does it mean for patients who already have trouble accessing therapies or with finding and engaging with others like them? Cambridge Rare Disease Network provides insight.
RAREfest proved a huge success – check our print edition for details, with more online content to follow – but was overshadowed by a shocking story of gene-editing abuse which took place in China very recently.
There was a lot of goodwill – even love – at the Wellcome Genome Campus conference centre for RAREsummit this week.