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hopeforuld.bsky.social
Hope for ULD is uniting patients, families, doctors, and researchers to fund research, treatment, and education for Unverricht-Lundborg Disease ( #ULD ), also known as #EPM1. Learn more here: https://www.hopeforuld.org/ #RareEpilepsy #genetherapy
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Hope for ULD is celebrating Rare Disease Day by raising awareness for our fight against the ultra rare EPM1, Unverricht-Lundborg Disease. We are working to end the suffering of ULD! #rarediseaseday #epm1 #unverrichtlundborgdisease #genetherapy #RareEpilepsy

submitted 3 hours ago • 0 comments

Important words from an organization that is funding ULD/EPM1 research! # unverrichtlundborgdisease #epm1 #RareEpilepsy #genetherapy epilepsynewengland.org/news/my-stor...

submitted 3 days ago • 0 comments

Want the latest research news? Sign up to get our occasional email updates. You can subscribe at the bottom of any page on our website! Check it out! www.hopeforuld.org #epm1 #uld #unverrichtlundborgdisease #genetherapy #RareEpilepsy #hopeforuld

submitted 6 days ago • 0 comments

The long-awaited ULD/EPM1 Natural History Study is underway. We currently need more participants. This study is a crucial next step. #ULD families, if you have not yet contacted Josh Rong to sign up, please email him ASAP! www.hopeforuld.org/research #epm1 #unverrichtlundborgdisease #genetherapy

submitted 11 days ago • 0 comments

Nearly every medicine we benefit from started with NIH-funded research. Early discovery work starts in academia. Immunotherapies? Gene therapy for rare diseases? Alzheimer’s and Parkinson’s medicines? Vaccines? Novel cancer treatments? Psychiatric medicines? You betcha. 1/

submitted 16 days ago • 89 comments

Do lesions that cause psychosis fall into a common brain network? Exciting new work by @andrewpines.bsky.social, @shansiddiqi.bsky.social and colleagues – tweetorial below by the first author, paper here: jamanetwork.com/journals/jam...

submitted 16 days ago • 1 comment

Please forward this to all ULD/EPM1 patients you know! Help the researchers HELP YOU!!! If you have not yet joined the ULD/EPM1 Natural History Study, contact Joshua Rong at [email protected] www.hopeforuld.org/research #epm1 #unverrichtlundborgdisease #genetherapy #RareEpilepsy

submitted 22 days ago • 0 comments

I've updated the starter pack for rare genetic epilepsies 🧠🧬 It is a work in progress and I will continue to update the pack over the coming weeks 🤩 go.bsky.app/NXw4e8C

submitted 99 days ago • 9 comments

We are pausing on this Giving Tuesday to celebrate the work of our researchers. Their tireless efforts keep bringing us closer to the goal of ending the suffering caused by ULD/EPM1. #epm1 #unverrichtlundborgdisease #RareEpilepsy #genetherapy #GivingTuesday

submitted 87 days ago • 0 comments

We are #thankful for 1. Results of research: www.nature.com/articles/s41.... 2. The ULD/EPM1 Natural History Study:  www.hopeforuld.org/research. Embracing thankfulness and hope! 💜 #epm1 #unverrichtlundborgdisease #genetherapy #RareEpilepsy

submitted 92 days ago • 0 comments

The ULD/ EPM1 Natural History Study is underway! If you are a ULD (EPM1) patient family, or if you know of one, please have them contact [email protected] Join us in the race to end the suffering caused by ULD/EPM1! #epm1 #genetherapy #rareepilepsy #unverrichtlundborgdisease #uld

submitted 95 days ago • 0 comments

We strongly suggest that academic publishers and other platforms that host research rapidly implement a Share to Bluesky button for their articles. Here's how: docs.bsky.app/docs/advance... #AcademicSky #HigherEd #Altmetrics

submitted 102 days ago • 176 comments

We are thrilled to announce that our team of researchers has just initiated a Natural History Study for ULD/EPM1! This is an amazing opportunity for ALL patients and families to help researchers better understand ULD/EPM1! More information here... www.hopeforuld.org/research

submitted 107 days ago • 0 comments

Hi all, we are happy to be here. Teddy says "Hi!" He helps one family as they deal with ULD (Unverricht-Lundborg Disease), also known as EPM1. #EPM1 #ULD #UnverrichtLundborgDisease #RareEpilepsy #RareEpilepsyNetwork #genetherapy

submitted 107 days ago • 0 comments