🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Hi my name is Scarlett! I'm a tenacious girl with a heart of gold and have a #GABRA1 frameshift mutation (p.Val290Glufs*10). We're fundraising for a cure! give.rarevillage.org/campaign/scarl… Also, check out my FB profile: facebook.com/scarlettsgabra… #raredisease #gabaa #mutations #research

Read more about our story here and how you can become apart of Scarlett's Village! #neurotwitter #gabra1 #epilepsy gabra1village.org/our-story

Tomorrow our Co-founder and CEO Onno Faber will speak on "Filling the Research Void for Rare Diseases" at CDX Accelerate Health + Wellness. Learn more: techonomy.com/event/cdx-acce…

Excellent talk by @sameermzuberi on the phenotypic spectrum of #SYNGAP1-related #epilepsy ‼️ Sameer is highlighting the importance of patient advocacy groups in driving research 💜 - couldn't agree more ‼️ #EpilepsyAwareness #StrongerTogether #RareDisease #Genetics

Ask Congress to Support the Accelerating Kids' Access to Care Act! congressweb.com/NORD/164?frame…

Ask Congress to Support the Accelerating Kids' Access to Care Act! congressweb.com/NORD/164?frame…

Deeply honored to receive a grant from the Lundbeck Foundation Collaborative Projects programme! Learn more about our collaborative project on #GABA-A receptor related epilepsies 👇 #Epilepsy #PrecisionMedicine Cure GABRB2 Scarlett's GABRA1 Village @Philip_K_Ahring @LabPerrier Dennis Lal

👏👏👏 lundbeckfonden.com/en/nybrud-arve…

Happy Rare Disease Day! As always, those of us with a rare disease or family members that are living with one everyday, today is about YOU! How are you showing your stripes? Visit gabra1village.org to learn more about #GABRA1 and how you can get involved!

Join our community on Invitae’s Ciitizen Rare Patient Network today. It only takes a few minutes to sign up and you will get access to all your medical records in one place at no cost. US Patients only. ciitizen.com/rarenetwork/SGV

Building relationships with the people who are the driving forces behind rare diseases makes for great friendships! Rockstars working on #gabra1 #neurotwitter

Great to kick start the Australian arm of our #NHMRC ideas grant! #GABRA1, #GABRA3,#GABRB2, #GABRB3, #GABRD, #GABRG2 Thank you The Reid Lab (Florey) for coming to Sydney! 😔 Rikke S. Møller that you weren't here to join us. Scarlett's GABRA1 Village Cure GABRB2 Rare Epilepsy Network

You'll know by now that we've officially launched #60SecondsofRARE. To get involved, email rpender@rarerevolutionmagazine, and you'll receive four questions, including video guidelines Then, film yourself answering the four questions, and that's it!

We need to show researchers and pharma our community is engaged and ready for treatment. If you haven’t signed up yet, join now! A few minutes of your time can greatly impact our community. US Patients only. ciitizen.com/rarenetwork/SGV

Vinpocetine displayed substantial positive modulation of α1β3γ2 receptors ‼️ Upon add-on treatment with 40 mg #vinpocetine daily for 16 months, the patient experienced an overall improved quality of life as well as seizure freedom ‼️ #Epilepsy 💜 #GABRA1 Scarlett's GABRA1 Village

#GotMyCRID Have you heard of The CRID? The CRID is a patient-generated identifier specifically for use in clinical research. The parent/patient decides who to share it with. Join the future of rare disease research today and get your own CRID. thecrid.org

The Cost of Delayed Diagnosis. Tune in now: go.globalgenes.org/ras-igstory #RareAdvocacySummit #WeekInRare

A great f2f follow-up to our March #NHMRC Ideas meeting. Thank you Sydney team for coming all the way to Melbourne and hope you enjoyed the weather. Looking forward to more f2f meetings. #GABRA1, #GABRA3, #GABRB2, #GABRB3, #GABRD, #GABRG2, The Florey, Scarlett's GABRA1 Village