MSL3 Syndrome is an ultra-rare disorder, but you and your loved ones are not alone on this journey.

Welcome to our MSL3 Syndrome community! We are a global group of families and supporters — teachers, doctors, geneticists, friends and others — who have a loved one diagnosed with MSL3 Syndrome.

Until there are more research studies and documentation on MSL3 Syndrome, we are the go-to network of people who are knowledgeable about this disorder. We can connect you to helpful resources, registries and an active online support group to help you and your loved ones navigate this challenging disorder.

Join Our Support Group

Join our Facebook support group to connect with families with an MSL3 Syndrome diagnosis and others in the MSL3 Syndrome community. All are welcome to share information and support one another in a safe and comforting environment.

“Our geneticist really didn’t have any information to give us … because she had never diagnosed anyone with this. They suggested we look for support groups online, and that is when I found this group. I never imagined finding this much support in a Facebook group, but the MSL3 group has been such a great resource for our family to connect with other affected families.”

MSL3 Syndrome Support Group Member

Our members can be found around the world in the United States, Canada, Great Britain, Ireland, New Zealand, Israel, Estonia, Germany, Norway, Poland, France, Spain, Australia and Sweden. And we know that through awareness, the list of registered diagnoses will expand even more.

Register Your Diagnosis

Registering a MSL3 Syndrome diagnosis is crucial for increasing documentation and interest in the syndrome for research purposes. Rare disease registries help us all learn about, make connections and better understand the disorder.

We’d recommend registering your diagnosis on the GenIDA registry first, an international registry of rare disorders.

Recommended Resources

As we continue to compile information about MSL3 Syndrome, these resources can be helpful places to turn to and learn more about MSL3, living with a rare disease, what to expect and how to navigate it.

Research Articles

Rare Disease Resources

It can be a challenging path at times, but we’re so grateful for this unique community dedicated to improving the lives of our children and loved ones affected by MSL3 Syndrome. Until there are treatments and a cure, we have each other to make it through.