Welcome to Our Stromme Syndrome Community
Stromme syndrome is an extremely rare genetic condition that affects multiple parts of the body—most commonly the eyes, brain, and intestines. Because so few cases have been documented worldwide, every story, every voice, and every piece of information matters.
Our mission is to raise awareness, foster connection, and provide support for families navigating life with Stromme syndrome. Whether you’re a parent, a caregiver, a medical professional, or someone simply wanting to learn more, you’re welcome here.
What You’ll Find Here:
- Overview of Stromme Syndrome — What we know, current research, and symptoms.
- Family Stories — Personal journeys from around the world.
- Resources — Helpful articles, support networks, and more.
- Get Involved — Ways to connect, contribute, or support our mission.
Share Your Story
If your child or someone you love has been diagnosed with Stromme syndrome, we’d love to hear from you. Your experience could offer comfort, insight, and hope to others who are just beginning this journey. [Submit Your Story →]
Stay Connected
We host a private Stromme Syndrome Facebook community where families can connect, ask questions, and offer support to one another in real time. You’re warmly invited to join us there!
Together, we can build a community of strength, knowledge, and support—even in the face of something so rare.