STXBP1 FOUNDATION
STXBP1 Foundation
821439459
2017
HOLLY SPRINGS, NC 27540
stxbp1disorders.org
curestxbp1
stxdisorders
Podobné organizace
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SETBP1 Society |
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International FOXP1 Foundation |
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Podobné organizace global
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EPILEPSY SOCIETY |
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EPILEPSYSUSSEX |
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CDKL5 Canada |
Podobně sociální sítě (3921)
1.plyšový útulek z.s.4000 |
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Aeroklub Zbraslavice z.s.4000 |
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Trans World Radio4000 |
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Český institut biosyntetické psychoterapie, z.ú.4000 |
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Divadlo Evy Hruškové a Jana Přeučila4000 |
Více Vrozené vady, genetická onemocnění
DiaKar, z. ú.Karlovy Vary |
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Český institut biosyntetické psychoterapie, z.ú.Praha |
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Občanské sdružení Imunodeficitních pacientů HAE / AAE z.s.Brno |
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Novinky
Our census for Q2 2025 is out! 1,378 #STXBP1 patients in 57 countries. +68 patients identified in this quarter! https://t.co/u7Ee21zEq5 #nopatientleftbehind #STXBP1GlobalConnect @stxbp1 @Stxbp1_italia @FranceStxbp1 @STXBP1Japan https://t.co/hMmgGdVA0p (tw)
🏔️ Join Us at the STXBP1 Summit+ Family Meeting! 📍Westminster, Colorado 🗓 July 18–20, 2025 🎟 Early Bird Registration Ends May 31! 🌟 Why Attend? ▪️Connect and build friendships with other STXBP1 families ▪️Presentations from STXBP1 experts to educate & inform ▪️Social events like our famous Dinner & Dance Party — bring your dancing shoes! ▪️Research opportunities to move science forward ▪️Family support sessions to empower and uplift Don’t Miss These Talks⬇️ ➡️Gene Therapy Development in the Lab – Mingshan Xue, PhD ➡️Clinical Trials from a Patient Perspective – Scott Demarest, MD ➡️SYNRGY Gene Therapy Clinical Trial Information – Capsida Biotherapeutics ➡️"How to Handle More Than You Can Handle" – Reconnecting with Yourself After a Rare Disease Diagnosis – Amanda Griffith-Atkins, MS, LMFT & Special Needs Parent 🚩 HOT TIP: Hotel rooms are filling up fast! Reserve now to guarantee our low rate. ⏰ Register by May 31 to lock in early bird pricing Registration & Hotel Reservations HERE⬇️ www.stxbp1disorders.org/2025-summit ⛰️ See you in Colorado! (fb)
Poslední komentáře
Absolutely inspired by the mission of the STXBP1 Foundation! Together, we can raise awareness and support crucial research for those affected by this rare condition. Let's spread the word and advocate for change! 💙✨detail |
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Incredible work being done by the STXBP1 Foundation! It's heartwarming to see a community come together to support families and push for research in neurodevelopmental disorders. Let's unite for awareness and a cure! 🙌💪detail |
Poslední diskuze
1. What innovative fundraising strategies have other NGOs successfully implemented to raise awareness and funds for rare diseases like STXBP1-related disorders?Odpovědí: 3, Naposledy před 1 den detail |
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2. How can we better engage and support families affected by STXBP1 disorders in advocating for research and treatment options?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
30
4.5
HOLLY SPRINGS
O společnosti
- G20 -
Science Love CURE Our Mission Welcome to the STXBP1 Foundation a 501c3 dedicated to raising awareness and finding a cure for STXBP1Related Disorder a rare neurodevelopmental condition and genetic epilepsy. We work with families physicians scientists and pharmaceutical innovators. The STXBP1 Foundation was created by a group of dedicated parents. Our nonprofit is focused on advocacy driving research and providing our families and their physicians with information and resources.
Vrozené vady, genetická onemocnění
