Cure GM1 is extremely proud to present a very special virtual conference, to be held October 12th and 14th, 2022. We invite the GM1 community, GM1 families, biotech professionals, physicians, and the general public to attend.
Day 1 – Community Conference
The virtual community conference will take place on Wednesday October 12th, 2022 via a series of webinars. Registration is FREE for families. Day 1 is a great opportunity to learn about research being done into possible treatments for GM1 gangliosidosis, as well as progress being made in existing trials. There will be family-oriented talks and topics relevant to caregivers. Don’t miss the chance to connect with other attendees and GM1 families!
Day 2 – EL-PFDD Meeting
Friday October 14th, 2022 will be devoted to our one time ever Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD) with the FDA. This public meeting is free to all who wish to attend. We strongly urge everyone in the GM1 community to register for this FREE meeting! GM1 patients and caregivers will have the chance to give direct input to the FDA to affect the development of drugs for GM1 gangliosidosis. Stakeholders will have the opportunity to learn from GM1 caregivers.
Registration is now closed for the
Cure GM1 2022 International Virtual
GM1 Community Conference
Recordings of the conference will be available at a later date. Keep an eye out on social media and in our newsletters for a link to the recordings in the coming weeks.
You can still attend the EL-PFDD
It’s not too late to attend the EL-PFDD, even if you have not registered for the conference. We urge everyone in the GM1 community to attend. The more people who give their experiences and perspectives, the more robust the data collected will be.
Attending the GM1 EL-PFDD is Easy
On Friday, October 14th at 10:00 am EST, visit curegm1.org/pfdd to access the livestream.
View the recording of the webinar, What is the EL-PFDD?
Learn how to Make Your Voice Heard!
In this webinar you’ll learn what an EL-PFDD is, what will happen during the EL-PFDD meeting on October 14th, and why it matters that you attend. This Webinar will be conducted by FDA regulatory consultants.
GM1 Families Unite!
Get Informed! Engage and Learn about How to Make a Difference! Make Your Voice Heard and Make a Plan to Join the Global GM1 Community!
2022 Cure GM1 Virtual Conference Agenda
*Please note agenda is subject to change.
Wednesday October 12th
| 2022 International Virtual GM1 Community Conference |
|---|
| Introduction, Keynote, Impact of GM1 on the Family Get oriented, inspired and engaged |
| Research, Natural History Studies, and Clinical Trials Learn what’s happening and what’s next |
| Caregivers Experiences, Advocacy, Family Connections Navigate life with GM1, learn and connect |
Friday October 14th
| GM1 Externally-Led Patient-Focused Drug Development Meeting |
|---|
| GM1 Externally-Led Patient-Focused Drug Development Meeting with FDA Don’t miss this incredible once in a lifetime opportunity! |
Detailed Agenda available for download:
Family Resources
Thank you to conference speaker Holly Peay of the Sibling Support Project for these helpful resources for GM1 families that have non-GM1 children:
- How to Let Young Siblings Know You Care
- What Siblings Would Like Parents and Service Providers to Know
Thank you to our Sponsors!
Sponsorships available
Sponsorship helps us cover overhead costs and keep the conference free for families. If you would like to become a sponsor of the 2022 conference, contact us today for a sponsorship packet to help support patient advocacy, awareness, and community. Thank you!
2022 Conference Merchandise
Find more conference merch at Redbubble and Spring!
Conference Virtual Background
Download a Virtual Background to use while you attend the conference sessions.
FAQs
Please take a look at answers to common questions. If you have a question not answered here, please feel free to get in touch at info@curegm1.org.
Give to Cure GM1
This conference is a valuable resource for GM1 families and our community, and this year the EL-PFDD presents an additional expense. Please consider donating to Cure GM1 to ensure our community will continue to have access to resources like this.