Sibling Circle
KCNT1 sibling circle. A space for siblings of KCNT1 warriors to meet and make new friends. Moderated by VIP-Sibling trainer, Jess Kruger.
Blood Collection Day
Blood Collection Drive is an opportunity to contribute samples to the biorepository for clinical trial research.
AES 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. 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.
AES 2024 conference in Los Angeles!
Find future Meetings of the American Epilepsy Society (AES) here
RESEARCH ROUNDTABLE
The KCNT1 Epilepsy Foundation is hosting our Fall Research Roundtable on Thursday, November 7th. The goal of the roundtable is to provide a forum for clinicians and researchers to share their latest findings and insights on this rare and complex disorder with each other and the KCNT1 community.
NORD Breakthrough Summit
The NORD Breakthrough Summit audience encompasses a wide range of key stakeholders involved in rare disease.
Join over 900 rare disease advocates, experts, and stakeholders from around the world to tackle the most pressing issues facing the rare disease community.
See more here.
Sibling Circle
KCNT1 sibling circle. A space for siblings of KCNT1 warriors to meet and make new friends. Moderated by VIP-Sibling trainer, Jess Kruger.
Blood Collection Day
Blood Collection Drive is an opportunity to contribute samples to the biorepository for clinical trial research.
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.
Family Meeting - Pathway to Trials
Join the KCNT1 Epilepsy Foundation to learn more about how the foundation funds research, how we are supporting treatments in development, and how you can help influence trial design. Please RSVP for this important webinar!
Part 2 - Navigating Your Grief Journey
Join us for two consecutive evenings for meaning conversations with Brad Thompson, MA and LCP-S. Brad comes to us from the Child Neurology Foundation and conducts the Peer Support training. As a compassionate counselor and father to Hali, Brad will guide us through a discussion on the various stages of the grief journey. His talk will focus on the Stages of Adaptation, a framework that has proven effective in helping individuals navigate their path through grief.
Navigating the Grief Journey -Part One
Join us for two consecutive evenings for meaning conversations with Brad Thompson, MA and LCP-S. Brad comes to us from the Child Neurology Foundation and conducts the Peer Support training. As a compassionate counselor and father to Hali, Brad will guide us through a discussion on the various stages of the grief journey. His talk will focus on the Stages of Adaptation, a framework that has proven effective in helping individuals navigate their path through grief.
Sibling Circle
KCNT1 sibling circle. A space for siblings of KCNT1 warriors to meet and make new friends. Moderated by VIP-Sibling trainer, Jess Kruger.
Blood Collection Day
Blood Collection Drive is an opportunity to contribute samples to the biorepository for clinical trial research.
Blood Collection Day
Blood Collection Drive is an opportunity to contribute samples to the biorepository for clinical trial research.
Blood Collection Day
Blood Collection Drive is an opportunity to contribute samples to the biorepository for clinical trial research.
Bereaved Family Planning Discussion
Join the Foundation and fellow KCNT1 community members to discuss ways to support each other and explore ways to remain involved in the community.
Meeting ID: 213 822 266 182 Passcode: ANQrrV
Dad's Monthly Meetup
Join KCNT1 dads for some casual conversation. Pre-registration is required. https://us02web.zoom.us/meeting/register/tZUkceCrqz8uEtVEazfuwkvS6fh_rjTX9aat
Sibling Circle
KCNT1 sibling circle. A space for siblings of KCNT1 warriors to meet and make new friends. Moderated by VIP-Sibling trainer, Jess Kruger.
Million Dollar Bike Ride
Join our awesome families at this fun-filled event with 30 rare disease groups! Form a virtual team, ride or donate!
Research Roundtable
Register to meet with researchers, clinicians and industry representatives with KCNT1 programs. Be part of the solution, nd bring hope to hundreds of families around the world.
Dad's Monthly Meetup
Join KCNT1 dads for some casual conversation. Pre-registration is required. https://us02web.zoom.us/meeting/register/tZUkceCrqz8uEtVEazfuwkvS6fh_rjTX9aat
Bereaved Caregiver Meetup
KCNT1 Bereaved Caregiver Meetup 5/22/24 8pm Eastern. Registration required.
EPI event
Foundation co-founder Dr Justin West returns to New York as the Keynote Speaker for the EPI organization, a longstanding organization providing personalized care, education, training, advocacy, and support solutions to meet the needs of people with developmental disabilities, epilepsy, and brain injury.
World Orphan Drug Conference
The World Orphan Drug Congress brings together leading pharmaceutical and biotech companies, government and regulatory authorities, patient advocacy groups, payers, investors and solution providers. The conference is a place to meet and brainstorm ways to advance orphan drug development and improve access to life-saving therapies.
Sibling Circle
KCNT1 sibling circle. A space for siblings of KCNT1 warriors to meet and make new friends. Moderated by VIP-Sibling trainer, Jess Kruger.
Lacrosse Charity Game
Chatfield Chargers Boys Lacrosse team honor their coach and the KCNT1 Epilepsy Foundation with a charity game in Littleton, CO. Every dollar donated makes a difference! Text the word “charly” to 53-555 to make a donation.
Purple Day
Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.
Sibling Circle
Meet the KCNT1 warrior Siblings in this initial meet-and-greet, Sibling Circle! Registration is required. Prepare by ordering your free VIP Sibling kit and purchase a t-shirt from our Bonfire shop!
