Resources

Because Stromme syndrome is so rare, reliable information can be hard to find. We’ve gathered trusted medical resources, family-friendly explanations, and personal stories to help you learn more and feel less alone.

Whether you’re looking for scientific research, real-life experiences, or just a place to begin—this page is a starting point. We’ll keep adding to it as new information becomes available.

If you have a helpful link or video you’d like to suggest, feel free to contact us.

Medical + Research Links

A collection of trusted, science-based information about Stromme syndrome:

• GeneReviews – Stromme Syndrome (NCBI)
• Orphanet Entry on Stromme Syndrome
• NIH Genetic and Rare Diseases Info (GARD)
• OMIM – Stromme Syndrome
• RareDiseases.org (NORD)
• PubMed Search – Stromme Syndrome

Videos

These videos help explain the condition, or share personal experiences from families like ours:

• Intro to Stromme Syndrome – YouTube
• Meet Angie and Ruby – Living with Stromme Syndrome
• The Losing Hand | Catherine Comeaux
• Ruby the Treasure (Stromme Syndrome)

Support & Connection

• Join Our Private Facebook Community – For families, caregivers, and anyone affected by Stromme syndrome.
• Submit Your Story → Help us grow this collection of real experiences.