August 23, 2022

THE NEXT FOUR MONTHS WILL COME FAST - GET READY! #S10e71

11 minutes

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)

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)

Webinar: https://www.syngapresearchfund.org/webinars/intro-to-rare-xs-syngap1-data-collection-program

5. COME TO THE CONFERENCE

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

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By Syngap Research Fund, 501(c)(3)

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