THE NEXT FOUR MONTHS WILL COME FAST – GET READY! #S10e71
0. RAREBASE https://www.rarebase.org/
We announced a partnership at year ago, check out #S10e27 https://www.youtube.com/watch?v=r3bS9YepQ4s
Now we are doing phase 2… stay tuned.
1. LONGBOARD PHARMA https://www.longboardpharma.com/
STUDY- https://pacific.researchstudytrial.com/ (Shared in #S10e65 – https://www.youtube.com/watch?v=hSK21-y8fQI)
TALK – https://www.youtube.com/watch?v=s7l7wnrEX5E (Link shared in #S10e67 – https://www.youtube.com/watch?v=dVpl1UEBVXA)
2. SEIZURE TRACKER
Watch #S10e70 https://youtu.be/g6R9ejJnYbw
More detail in Webinar64 https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker
3. WEBINARS
PRAXIS INVITAE – SEPT 8th at 10 PT https://pages.questexinfo.com/invitaereg09082022/?pk=Invitae
BEN PROSSER – SEPT 29th at 9 PT https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides
4. REGISTRIES: CIITIZEN, SIMONS, RARE-X
CIITIZEN FIRST in US (MEDIAL RECORDS)
Sign up at https://Ciitizen.com/SYNGAP1
Refresh by logging into https://app.ciitizen.com
Profile update: https://intercom.help/ciitizen-corp/en/articles/6421786-ciitizen-profile-update
SIMONS GLOBALLY (GC INTERVIEWS)
Simons Searchlight participants can be from any country, as long as they speak English, Spanish, French or Dutch. Click Join Us on https://www.simonssearchlight.org/research/what-we-study/syngap1/
RARE-X (QUESTIONS)
Sign up: https://syngap1.rare-x.org/
Webinar: https://www.syngapresearchfund.org/webinars/intro-to-rare-xs-syngap1-data-collection-program
5. COME TO THE CONFERENCE
Register: https://Syngap.Fund/Treat
Book a room: Link on the registration page.
6.COVID DEE SURVEY
https://www.surveymonkey.com/r/DEEsCOVID19
7. LOTS OF OTHER EVENTS TOO!
- 3 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/
- 6 Weeks: October 8 in NJ – Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala
- 6 Weeks: October 8 in SC – Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap
- 11 Weeks: November 12 in GA – Sparks of Hope Gala https://syngap.fund/soiree
- 14 Weeks: December 1 & 2 in TN – Syngap Science Meeting – https://syngap.fund/treat
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 71 of #Syngap10 – August 23, 2022
#PRAXIS #CIITIZEN #INVITAE #SEIZURETRACKER #CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration
