Every Patient Matters. Global Edition: SRF touching Ukraine/Poland , Greece , Colombia/LatAmerica , Netherlands & UK … #S10e76

Every Patient Matters. Global Edition: SRF touching Ukraine/Poland , Greece , Colombia/LatAmerica , Netherlands & UK … #S10e76

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