by Suzanne Morris | Jul 31, 2018 | Events, Raising awareness, RAREfest, Unique Feet
The RAREfest logo comes to life…
Our Graphic Designer has been to summer school, learning to screenprint at Cottenham Village college under the tuition of Ricki Outis – local textile and community artist.
The set up was not commercial so everything was done in a way that was possible to set up at home in a garage, or on a kitchen table, and where all masks and templates are made with paper.
The RAREfest logo offered the perfect opportunity to try out the process of printing with multiple colours and needing to get the registration of all 4 colours as close to each other as possible.
So she cut out four masks, one for each colour, mixed in ink to match the RAREfest colours and away she went – hoping that the logos would work well enough to be useful.
We’re really pleased with the results and are excited to see what she makes for our Unique Feet group…
After the first mask is removed
First colour done, 3 to go
Second and third colours having been added
9 RAREfest logos ready to be used
by Lindsey Brown | Jul 26, 2018 | Artificial Intelligence, Community, Drugs and pharmaceuticals, Front page news, Fundraising
Congratulations to Cambridge start-up, Healx, co-founded by founder and trustee of CamRARE, as it raises $10m to help repurpose drugs for rare diseases.
Forbes and the Telegraph today report that the co-founders of Healx, Tim Guilliams – founder and trustee of CamRARE, and British inventor of Viagra – Dr David Brown, have raised funding of $10m for their Cambridge start-up that uses artificial intelligence (AI) technology to find medicines to treat some of the world’s rarest diseases.
The Telegraph states “Dr David Brown, the scientist who developed the blockbuster treatment for erectile dysfunction for Pfizer, is the co-founder of Healx, a UK medical tech startup that uses machine learning to find treatments for 7,000 rare conditions that do not currently have an approved method of treatment”.
It goes on to explain why Healx believe that the lengthy traditional drug discovery process isn’t economic for rare diseases and how they hope to accelerate the time to drug discovery and reduce costs through their AI
technology driven systems which search for drugs that can be repurposed.
Dr Brown’s work with Viagra, which was developed originally to treat heart patients, proved that drugs intended to help one condition can sometimes be adapted to treat others. To read the full article click here.
by Lindsey Brown | Jul 23, 2018 | Community, Guest posts, Research
Medics4RareDiseases are excited to announce the launch of their new research project: The M4RD Red Flags Survey.
The purpose of the survey is to find out what different rare diseases have in common during the time before diagnosis, a period often called ‘the diagnostic odyssey’.
This is a piece of research that M4RD have wanted to do for many years as they have attended conferences listening to similar stories from patients and families irrespective of their specific rare disease. The final survey is the culmination of many hours of discussion and design.
The survey opens on Monday 23rd July and closes at the end of August 2018.
Please get involved and share your views so we can all support Medics4RD in driving change within the medical profession in terms of rare disease diagnosis. It is an online survey that takes 10 minutes to complete and can be accessed via this link: http://bit.ly/M4RDredflags.
If you need to access the survey in any other format or have any issues don’t hesitate to contact email@example.com.
by Lindsey Brown | Jul 21, 2018 | Activities, Community, Events
Findacure’s Annual Cambridge rare disease Showcase is back on 16th August.
Findacure are also looking for daring individuals to take on their infamous five-minute lightning talk challenge. If you have an exciting project to announce, a personal rare disease experience, or a unique approach to rare disease research, why not share it at their event? Calls for lightning talks are open until Friday 27th July and can be submitted during registration.
Tickets are available now by visiting www.findacure.org.uk/cambridge-showcase and attendance is free to patients, patient groups and charities.
by Jo B | Jul 7, 2018 | Artificial Intelligence, Events, Genomics, Med tech, Raising awareness, Technology, Uncategorized
Some of the CamRARE team joined 150 participants at the Wellcome genome campus BioData Hackathon on 2-3 July.
Focused on finding novel ways to use biological data to improve healthcare, teams had 2 days to design, develop and present their solutions. CamRARE played a pivotal role in setting the scene for the 2-days as trustee Dr Gemma Chandratillake took to the stage to deliver a presentation reminding participants about the utility of a diagnosis for those undiagnosed and living with rare conditions and the value of patient-centred, cross-sector working with an open approach to sharing research and data.
Dr Gemma Chandratillake, CamRARE trustee, inspires the attendees with her patient-centric talk
The 150 participants with backgrounds in statistics, bioinformatics, genomics, medicine, design, entrepreneurship and patient advocacy listened to pitches from each of the challenge partners before making their way into teams with others interested in a particular challenge.
Jo, our events and communications manager, mentored a team working on a Microsoft challenge. The challenge was to create a system for a clinical trial for phase 3 oncology patients around the person’s home. The 4 teams working on this challenge all brought a variety of skills and creativity to the task and very much reflected on the patient at the centre of the challenge. The winning team designed an all inclusive box which allowed video calls with healthcare professionals, had an integral digital pill dispenser and a section to collect require samples for collection.
And the winners were…
Simon Hazelwood-Smith was one of the winning team in the drug-repurposing challenge set by Open Targets. You can read his blog post here about how their idea was inspired by Gemma’s talk.
Twitter image from the #BioHack challenges from the Wellcome Genome Campus website.