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Our first Wikipedia Edit-a-thon

We teamed up with caregivers and rare disease champions to curate content, add citations and create completely new Wikipedia articles on rare diseases, helping to raise awareness for the conditions in the community. In total, we contributed over 250 edits!
25 August 2022   |  
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Five new Wikipedia articles were created on the day in the following rare diseases: SLC6A1 epileptic encephalopathy, Spastic paraplegia 15, Arboleda-Tham syndrome (KAT6A syndrome), KCNQ2 developmental and epileptic encephalopathy and HNRNPH2-related disorders. Two more draft pages were created for SATB2-associated syndrome and SLC13A5 citrate transporter disorder.

Dr Clara Tang, Alliance Strategy Manager, who led the Edit-a-thon organising team said “One of our values is ‘Care for Rare’. It’s so important that we embed ourselves in the rare disease community.  We are always looking for new ways to support individuals and groups, especially in rare diseases for which we are not currently developing a therapy.”

Further content and 28 citations were also added to a number of articles including Shwachman–Diamond syndrome, Genitopatellar syndrome, Dyskeratosis congenita, Batten disease, Centronuclear myopathy, Acrodysostosis and Coffin–Siris syndrome.

For Chromosome Deletion 5q15-23.1, where information and references on the indication was too limited to create a Wikipedia article, the team has drafted a clinical synopsis and information document with the caregivers to share with the wider community and physicians.

Commenting on the event, Álex Hermida, Senior Software Engineer, at Healx, said: “It was an incredible opportunity to connect and engage directly with caregivers and patients, and achieve something that has such an immediate and tangible impact.

Carina Thurgood, Chief Executive Officer of The Maddi Foundation, commented: “This was an incredible opportunity for SPG15 as we did not have a Wikipedia page. What a wonderful idea and resource for the rare disease community. I hope that these Wikipedia articles will continue to grow and be a useful resource for many. In particular, I have in mind parents that have to do their first terrifying “Google search” after diagnosis, and usually get completely lost; it helps to have a Wikipedia page,  to give a summary of such a rare disease. The parents will still be terrified and desperate to understand, so this gives a bit more clarity on the status quo.

Thank you very much to all the caregivers and rare disease champions who participated, as well as to the Wiki-median experts, Charles and Jonathan, who came to help and support the event – it wouldn’t have happened without you!

If you would like to find out more about Healx’s support of the rare disease community, please click here.

 

About Healx

Healx is a mission-driven technology company pioneering the next wave of drug discovery in order to bring novel, effective treatments to rare disease patients around the world. There are 7,000 known rare diseases that affect 400 million people across the globe, but only 5% of those conditions have an approved treatment. By combining frontier AI technology with deep drug discovery and development expertise, Healx can accelerate the pace, increase the scale, and improve the chance of success of rare disease treatment development in order to meet this huge unmet need and have unprecedented patient impact. 

Founded in Cambridge, UK, in 2014 by Dr. Tim Guilliams (a Biochemical Engineer and tech entrepreneur) and Dr. David Brown (co-inventor of Viagra and former Global Head of Drug Discovery at Roche), Healx has raised around $70 million to date, added over 20 projects to its risk-balanced therapeutic portfolio, and built a cross-functional team of more than 150 tech and drug discovery experts. For more information, visit www.healx.io or follow us on Twitter and LinkedIn.

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