In 2017, Gaten Matarazzo helped form a charity; nine years later, its partners issued 37 care tips

When a medical condition affects only a tiny fraction of the population, even experienced doctors may struggle to find enough information to treat it. This has been a longstanding challenge for people with cleidocranial dysplasia (CCD), a rare genetic disorder that affects the development of bones and teeth.

Stranger Things actor Gaten Matarazzo, who was born with the condition, has used his public platform to raise awareness and support people facing similar challenges.A new study published online in the Journal of Bone and Mineral Research on January 8, 2026, marks an important development in that effort. Titled Diagnosis, treatment, and management recommendations for cleidocranial dysplasia: A modified Delphi panel, the research establishes 37 expert-consensus recommendations covering diagnosis, treatment and long-term medical care.