Get Involved
Because Stromme syndrome is so rare, every connection matters.
Whether you’re a parent, caregiver, researcher, educator, or simply someone who wants to help—there are meaningful ways to get involved and support this growing community.
This isn’t a nonprofit or formal organization. It’s a labor of love created by a parent who knows what it’s like to face the unknown and wants to make sure others don’t have to face it alone.
Ways You Can Help
Share Your Story
Every family’s experience helps others feel less alone—and adds to what we all understand about Stromme syndrome. If you feel ready, we’d love for you to share your journey.
Join Our Facebook Community
We host a private Facebook group for families and caregivers affected by Stromme syndrome. It’s a place to ask questions, share wins and worries, and connect with others who truly understand.
Spread Awareness
Sometimes the simplest way to help is by sharing the site, a story, or a fact about Stromme syndrome with someone new. The more people who know about this condition, the more support we can create for future families.
Reach Out
Have an idea, a resource to share, or want to get more involved? We’d love to hear from you.
This community is built on stories, support, and shared strength. Thank you for being part of it.