Global #SYNGAP1 @cureSYNGAP1 ๐บ๐ธ๐ฌ๐ง๐ช๐บ @Syngap1A ๐ฆ๐ท @SyngapAus ๐ฆ๐บ @OSyngap1 ๐จ๐ฆ๐ซ๐ท @syngap1Germany ๐ฉ๐ช๐ฆ๐น@syngap1italia ๐ฎ๐น & ๐ช๐ธ๐ฎ๐ณ๐ฏ๐ต๐ธ๐ช๐จ๐ญ
Joined April 2020
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- Following 2,392
- Followers 2,793
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Pinned Tweet
24 Feb 2022
#NDD #Epilepsy Clinicians & Researchers!
Help secure a ๐ global #ICD11 for #SYNGAP1
Log into the WHO portal & support the proposal for #LD90point5
Full instructions here: syngap.fund/icd11
cc: @ingridscheffer @DrDaniAndrade @hanspschlecht @Syngap1Germany @SyngapAus
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/6Z0rIA1Q0Sk #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/C3L9psuaMOg #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
6/21 is #SplashForSyngap - Listen to this important segment from the latest episode of ๐๐ ๐๐๐๐๐ฃ Stories - then share with your world! Spread awareness of #SYNGAP1 and the place in this world for our loved ones suffering from this terrible disease!
Listen to all episodes at cureSYNGAP1.org/Stories or wherever you listen to podcasts.
#CureSYNGAP1 #SYNGAP1 #Epilepsy๐ #Autism๐ #IntellectualDisability๐ #RareDisease #SYNGAP1StoriesAndrew
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/_ZvHghcytrQ #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
๐ช๐บ Webinar for our friends in ๐๐ช๐ง๐ค๐ฅ๐:
๐ค๐ป New SYNGAP1 #SRFWebinar with @camp4tx
๐งฌ SRF EU | What you need to know about ASOs before clinical trials โ CAMP4 Case Study
๐ Wednesday, June 11
๐ 2:30pm ET ๐ 8:30pm CEST
๐cureSYNGAP1.org/CAMP4EU
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19 Mar 2025
RT @cureSYNGAP1: ๐ค๐ป New SYNGAP1 #SRFWebinar with Virginie McNamar & Mike Graglia
๐งฌ SRF | SRFโs 2024 Impact Report
๐ Thursday, March 27
๐โฆ
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with special guest host Monica Meyer! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/bK2z0xPQGWQ #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/S5fEoVu8zww #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/iDvW7HfzSGA #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
28 Feb 2025
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
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/oG46c4SUgVo #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/l8aCqQbE7LM #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/-6XnYok6EnY #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/ymCUn9YGMYQ #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/FE49Ok2Dtaw #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
How many people have SYNGAP1?
4Q24 #SYNGAPcensus = ๐1,530
Details: cureSYNGAP1.org/Census
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๐น๐น๐ฉ๐ฟ๐ป๐ช๐ฝ๐ฐ๐ธ๐ฆ๐ฒ๐จ๐ถ๐ฆ๐ณ๐ฟ๐ฆ๐ฒ๐ฎ๐ท๐ต๐ช๐ฎ๐ธ๐น๐ญ๐น๐ผ๐ฐ๐ฟ๐น๐ณ๐ฆ๐ฑ๐ฎ๐ถ๐ฌ๐น1
If we missed you, let us know!
#SYNGAP1 #SYNGAPCensus #CureSYNGAP1 @SyngapAus @SyngapGlobal @SRFEurope @SyngapAmericaLatina
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/xtB1SBh4fxc #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at youtu.be/ZTTuaMXiKF0?si=x7a2โฆ #SYNGAP1
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SYNGAP1 Global Network (SGN) retweeted
The SYNGAP1 community is at a loss as we share the passing of Annie. Please keep her family in your thoughts during this difficult time. As a community, we promise to always fight in your honor, Annie.
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