AES Annual Conference
The 2024 conference is in Los Angeles
Los Angeles Convention Center
December 7-9
STXBP1 Foundation Booth N1949 in the Epilepsy Resource Area
The American Epilepsy Society (AES) Annual Meeting brings together healthcare providers, scientists, advocates, industry, and other professionals dedicated to better outcomes for people with epilepsy. The conference typically attracts more than 5,000 attendees who come together to learn about cutting-edge science in over a hundred sessions, network with colleagues from all over the world, and see the latest in epilepsy treatments and diagnostic tools from more than 120 exhibitors.
Find future Meetings of the American Epilepsy Society (AES) here
2nd European STXBP1 Summit & STXBP1 Research Roundtable
In 2025 we’re back in Europe for our next Research Roundtable meeting and 2nd European Family Summit+
See us in Heidelberg Germany in 2025:
8-10 Oct 2025: Research Roundtable
11 Oct 2025: Family Summit+
See the recap from our 1st European STXBP1 Summit+ and Research Roundtable in Milan on our Past Conferences archive page
Week in Rare
Global Genes is on the move — Week in RARE is moving to Kansas City, Missouri in 2024.
Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation.
Mechanisms of Epilepsy and Neuronal Synchronization
We’ll be watching this important neuroscience conference for their latest research. Find out more about this event from the Gordon Research Conference (GRC) here.
Million Dollar Bike Ride
The Million Dollar Bike Ride brings over 750 fundraising-cyclists and volunteers to the University of Pennsylvania’s campus for a ride in University City, Philadelphia.
STXBP1-related disorders is represented by Lulu’s Crew in honor of Ben and Erin Prosser’s daughter, Lucy.
Here’s how you can join in on the ride.
Read more here.
NORD Living Rare Living Stronger
Living Rare, Living Stronger®
NORD Patient and Family Forum
National Organization for Rare Disorders (NORD)
WHERE: Hilton Los Angeles, Universal City in Los Angeles, California
WHEN: June 7-8, 2024
WHY:
Engage and meet other rare disease patients and families
Learn from experts and peers on rare disease topics
Access resources and information
Surround yourself with a supportive and knowledgeable community
More details here
Rare Disease Day
The STXBP1 Foundation will be represented in person at this year's NIH Rare Disease Day on February 29th, 2024. This is a program set at the main campus of NIH dedicated to bringing awareness to rare diseases along with challenges and advancement within science and treatment. The event is open to the public and can be attended either in person or virtually.
Go here to learn more about the NIH Rare Disease Day program and to register.
Go here to learn more about Rare Disease Day.
White House Rare Disease Forum
Our own Charlene Son Rigby is a panelist at this important event
American Epilepsy Society Annual Conference
The American Epilepsy Society (AES) Annual Meeting brings together healthcare providers, scientists, advocates, industry, and other professionals dedicated to better outcomes for people with epilepsy.
Find future Meetings of the American Epilepsy Society (AES) here
The STXBP1 Foundation’s booth graphics
FDA Externally-Led Patient-Focused Drug Development Meeting
Join in virtually to help inform the FDA on STXBP1-related disorders
Park City Epilepsy Meeting
Research from UCSF using STXBP1 in zebrafish will be presented at this neuroscience conference.
Global Genes Week in Rare
The STXBP1 Foundation was represented at this important industry event.
See more here.
STXBP1 Disorders Awareness Month
SEPTEMBER IS STXBP1 AWARENESS MONTH
We continue to recognize September as STXBP1 Awareness Month and we have a lot of exciting things planned.
7th Annual “Move to Cure” Run
STXBP1 Summit + video recordings
Regular Social Media Updates
Community Spotlights
Science Saturdays
And lots more …
See more here.
STARR Study: Information Webinar for Families
Learn more and have an opportunity to ask questions! Our speakers are James Goss, PhD, Foundation Scientific Director, and Jackie Steinberg, MPH, BSN, from our board who is leading our natural history study support team.
Attend using this Zoom link
The Million Dollar Bike Ride for Orphan Disease Research
We are gearing up for year 10!
Mark those calendars & we will see you real soon!
Survey Deadline Xcelerate Rare Challenge
Be Counted. Be Heard. Complete Your STXBP1 Surveys.
Rare Disease Day
It’s a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally!
The National Organization for Rare Disorders (NORD) is proud to be the official US partner for Rare Disease Day. We work with our sister organization EURORDIS (Rare Diseases – Europe) and others all around the world to drive an international campaign that shines a light on rare diseases and advocates for health equity for all those living with a rare disease. Visit the international Rare Disease Day site for additional information and resources at rarediseaseday.org.
AES 2022 Conference
The American Epilepsy Society’s (AES) annual conference is held in Nashville, TN this year from Dec 2-6. Come visit us in booth #233. The Exhibit Hall opens Saturday, 12/3 at noon and closes Monday, 12/5 at 2pm. STXBP1 disorders is also represented in the poster sessions.
For more info and registration go here.
Giving Tuesday Fundraiser
Giving Tuesday, often described as a global day of giving or a global generosity movement, is held each year on the Tuesday following Thanksgiving.
STXBP1 Foundation donations can be made directly here.
National Epilepsy Awareness Month
Learn more about National Epilepsy Awareness Month all throughout November here.
NORD Summit
Be sure to see CHoP’s Katie Rose presenting her poster on the STXBP1 disease concept model.
This year, NORD is thrilled to welcome all community stakeholders back together in-person to Washington, DC for the 2022 Rare Diseases and Orphan Products Breakthrough Summit. Join your fellow rare disease leaders from patient advocacy groups, government, industry, and academia for exclusive access to fresh insights, compelling connections, and expert resources. Don’t miss out on #NORDSummit
Learn more and register here.
FLOURISH: Art for STXBP1 at Christie’s, New York
On September 29th, 2022, accompanied by the support of artists and friends, The Finn Beaubien Family, will host FLOURISH: Art for STXBP1 at Christie’s, New York, an auction of contemporary art benefitting the STXBP1 Foundation.
All works included have been generously donated to this cause by the artists who made them. We are so grateful to them for their generous support. A cure for STXBP1 Disorders is in sight!
Read more about Florence and the event on the Flourish blog.
2022 September Awareness Month
We continue to recognize September as STXBP1 Awareness Month and we have a lot of exciting things planned. See more here.
2022 STXBP1 Summit +
Our annual Summit + conference is back as a live event this summer in Philadelphia. Join us at the Bellevue Hotel downtown on Friday, August 19 and Saturday, August 20 for research updates, STXBP1 Foundation plans, community networking, and more. Registration is open now! Watch our website for details on the agenda for both days. If you can’t make it to the conference, all sessions will be livestreamed in real time on our YouTube channel. They will also be recorded and available on our website one week after the event ends. See more here.
Webinar: RARE-X STXBP1 Disorders Data Collection Program
Attend a new Webinar on the upcoming STXBP1 Disorders Data Collection Program on the RARE-X platform
Learn how sharing patient information will collectively make a difference in finding a cure for STXBP1 disorders and other rare diseases.
Webinar: Neurogenetics Multidisciplinary Clinic at the Children’s Hospital Colorado
Learn about the Neurogenetics Multidisciplinary Clinic at Children’s Hospital Colorado as we get ready to launch this NEW STXBP1 center. See what’s involved in participating and why a multidisciplinary approach to treating rare diseases is important for both patient care and research efforts.
This is a ZOOM meeting open to all.
3rd Annual Synapse Roundtable
Attend the 3rd Annual Synapse Roundtable, co-hosted by the Syngap Research Fund, STXBP1 Foundation & CureSHANK.
Neurologists & researchers can quickly and efficiently learn about about neurodevelopmental disorders in synaptic genes: STXBP1, SYNGAP1, and SHANK3, where rapid progress is being made in clinical trial readiness due to impressive science and engaged patient communities.
Register here: https://bit.ly/stxbp1-3oX