You are not alone — we are in this together.
A DNM1 diagnosis changes everything. We connect families worldwide, share resources, and advocate for your child.
Newly diagnosed? We're here for you.
A DNM1 diagnosis can feel overwhelming. Our community of families understands exactly what you're going through — because we've been there too. Connect, share, and find support from people who truly understand.
Connect with families — join our private Facebook group to meet others navigating the same journey.
Sign up on the patient registry — our HIPAA-compliant registry with Citizen Health helps researchers understand DNM1.
Share your story — raising awareness helps find more families and accelerates the path to treatments.
Understand your genetic report — speak to a genetic counsellor and use trusted resources to interpret your results.
Tools to help you navigate DNM1.
Private Facebook Community
Connect with other DNM1 families in our moderated private group. Share experiences, ask questions, and find support from people who understand.
Join the Group →Citizen Health Registry
Join our HIPAA-compliant digital natural history study. Your health data directly supports the development of future treatments for DNM1.
Sign Up →Epilepsy Foundation Tools
Create a seizure action plan with your doctor, track medications, and access forms and resources from the Epilepsy Foundation.
Access Tools →Understanding Your Genetic Report
A genetic counsellor can help interpret your report. Watch this video for guidance on understanding what a DNM1 variant diagnosis means.
Watch Video →Varsome Gene Resources
Access the DNM1 gene database on Varsome for detailed variant information and scientific literature related to your specific mutation.
Explore Varsome →Contact Us Directly
Have questions specific to your child's situation? Reach out to our team — we're parents too, and we're happy to help guide you to the right resources.
Get in Touch →This website is provided for educational and informational purposes only and does not constitute medical advice or professional services. No material on this site is intended to be a substitute for professional medical advice or diagnosis. Always speak to your doctor or a qualified healthcare provider.