Get Involved with the PCDH19 Alliance
There are so many ways to make a difference. Whether you’re a parent, researcher, self-advocate, clinician, teacher, or advocate, your involvement helps strengthen the PCDH19 community and move us closer to better treatments and a cure. From raising funds to sharing your story, every action counts, and there’s a way for everyone to contribute.
How You Can Get Involved
Become a Member of the Alliance
Joining the PCDH19 Alliance is free, simple, and open to anyone connected to PCDH19. As a member, you’ll receive updates on research, events, and new resources. Join to stay informed about opportunities to connect and raise awareness.
Join Our Facebook Parent Support Group
The PCDH19 Alliance hosts a private Facebook support group for parents and caregivers of loved ones with PCDH19 epilepsy. It’s a safe space to ask questions, share experiences, and connect with others who truly understand.
Donate
Donating to the PCDH19 Alliance helps fund life-changing research, provide critical support for families, and raise awareness. Every gift, no matter the size, brings us closer to better treatments, stronger communities, and a future with more hope. Your financial support truly makes a difference.
Attend Events
Whether it’s a local meet-up or our PCDH19 Professional and Family Conference, our events are a chance to learn, connect, and grow together.
Participate in Research
Help advance understanding of PCDH19 by enrolling in studies or contributing to surveys and data collection.
Host a Fundraiser
From lemonade stands to walk-a-thons, creative fundraisers help support our programs, research efforts, and family grants.
Spread Awareness
Follow us on social media, participate in awareness campaigns, or help educate your local school or community.
Volunteer
Volunteer your time, talent or skill. We are always looking for folks to help us out in various capacities.
Shop Merch
Spread awareness and make your purchase count toward helping those with PCDH19 Epilepsy when you buy our official merch.
Share Your Story
Help us bring faces to PCDH19 through photos and videos on our website, social media, brochures and other promotional materials. If you are interested in sharing your photos, videos, and/or story with us, please complete the form below.