Instagram post by @all.spoonie.lori Lori

I have some exciting news! I am working on a project for my masters degree to collect EDS data and then use it to eventually find the gene for hEDS. I am so so excited to be part of this. But I need YOUR help. Within the next month a website goes live and when it does I need all your bendy zebras to join it and put your data in! If you would like to be involved please comment or send me a DM. Once you have put the data in I just need your patient identifier. In the future that want more doctors and clinic people to then be able to access the data. This gives a way for YOU to update medical records in advance of a clinic visit and after if you suddenly remember something. All those symptoms we juggle. In one place, you just give them the identifier. To researchers it is completely anonymous so I will appreciate your secret contribution. At the end of it if anyone wants to see my data I would be more than happy to share when done in the summer
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