Every Patient Matters. Global Edition: SRF touching Ukraine/Poland 🇺🇦🇵🇱, Greece 🇬🇷, Colombia/LatAmerica 🇨🇴, Netherlands 🇳🇱 & UK 🇬🇧… #S10e76
CURE SYNGAP1 PODCAST aka SYNGAP10
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Show Notes
EVERY PATIENT MATTERS
Lots of work with doctors these days.
e.g. Tony: DOI: 10.1159/000492706 https://www.karger.com/Article/FullText/492706
e.g. Jaxon: https://www.syngapresearchfund.org/post/syngap1-frequent-de-novo-missense-variant-alert-study-opportunity-for-p-gly344
WE ARE GLOBAL
SRF Site is now in all Languages!
Ukraine/Poland 🇺🇦🇵🇱- https://www.syngapresearchfund.org/post/122-a-letter-of-thanks-from-a-ukrainian-syngap-family #S10e72
Greece 🇬🇷- Greek framily from #S10e72 now working with expert in Spain. Thank you Dr. Aledo!
Colombia/LatAmerica 🇨🇴- Vicky is amazing. https://simposio.acmgen.org/
Netherlands 🇳🇱- We have a Rare-X Platform and everyone should engage. Sign up at
https://www.syngapresearchfund.org/webinars/intro-to-rare-xs-syngap1-data-collection-program
Watch #S10e71 starting at 5:30 https://youtu.be/iPoOjKBwPfY?t=333
Sign up: https://syngap1.rare-x.org/
UK 🇬🇧- News coming.
EVENTS ARE COMING
2 Weeks on October 8th!
New Jersey - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala
South Carolina - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap
3 Weeks:
October 12-15 in OH - Child Neurology Society
4 Weeks:
October 21 #UFDcure Cannonball 2.0 https://www.syngapresearchfund.org/cannonball #CannonballForTheCure #RareBase
NOVEMBER IS GIVING SEASON!
7 Weeks:
November 12 in GA - Sparks of Hope Gala https://cbo.io/bidapp/index.php?slug=syngap
November 14-15 in MA - PMC summit titled Personalized Medicine and the Patient
10 Weeks:
December 1 in TN - Syngap Science Meeting - https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-charting-our-rare-disease-treatment-path
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts: https://syngap.fund/10a
Episode 76 of Syngap10 - September 25, 2022
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology