by Jo B | Feb 26, 2018 | Artificial Intelligence, Genomics, Healthcare, Med tech, Technology
Dr Gemma Chandratillake, CamRARE trustee and East of England Genomics Education Lead, attended the No Isolation AV1 avatar breakout workshop at the CamRARE Summit 2017 in October.
Like others attending she quickly began to see applications for the robot beyond its original purpose, to reduce isolation for children living with long-term, chronic illness. At the summit, Mio Kristiansen, from No Isolation, gave the audience an opportunity to see the robot in action as it sat on the stage during the afternoon talks, controlled from Edinburgh by Rare Disease carer, father and advocate John Wallace.
John was unable to leave his family to travel to the event so joined us via AV1, watching the action live on his laptop at home, and on one occasion, heckling the speaker and being told to be quiet!
So how did this inspire Gemma to help her students?
Image above from Cambridge Independent newspaper
Screenshot above from C4 news website
by Jo B | Feb 5, 2018 | Events, Guest posts
In January 2018 CamRARE visited the 2-day GenomicsFest at ExCel in London hosted by Front Line Genomics.
We heard inspiring talks and made great connections for the future. It was exciting to see Rare Disease charities and individuals taking to the stage to share the importance of genomics in diagnosis and personalised treatment and to give the science a human side.
The Transforming Genetic Medicine Initiative have written a great blog about the patient centred focus of the festival. Check out the link to see how rare disease charities, individuals and advocates had their say. Many thanks TGMI for allowing us to share your blog and for ensuring patients and their advocates are at the heart of the conversation.
Image from Front Line Genomics website
by Jo B | Feb 4, 2018 | Events, Front page news, Summit
We collaborated with Lucia Tambini, film maker producing films for charities including Oxfam, Tourettes Action, SeeAbility and Walk the Walk, to capture the essence of our annual summit in 2017 and what it is about our city of Cambridge which offers great opportunities to drive change in rare diseases.
The theme of CamRARE2017 was ‘Re-imagining the Patient Journey’ and we worked hard to give patients and patient groups a platform and voice at the event through the Patient Journey Poster Exhibition and the Lightning Pitches element of the day.
For those who attended, take a look to see if you made it on film! For those who were unable to attend but are curious, watch the film and be inspired to attend this year’s RAREfest event – a weekend of celebration of everything rare on 30 Nov and 1 Dec 2018.