MSL3 Syndrome

05/03/2026

HAPPY MSL3 DAY!
Sending love to our community around the world ❤️

05/01/2026

MSL3 Day is May 3rd!

How are you planning to celebrate 🎉
(Share in comments)

02/28/2026

Happy Rare Disease Day!
Today we celebrate our ultra-rare MSL3 family along with the rare disease community in general.

Care about rare!

02/02/2026

We are progressing through our Research Readiness initiative and have received consistent feedback about the importance of joining our Data Collection Program (linked here). Even if you can just upload your genetic report, the impact is significant. Looking forward sharing more concrete updates soon!
https://rare-x.org/msl3syndrome/?fbclid=IwVERFWAPuAghleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEe5dUVANdI_dHArZMLtiZIekPWxVXiidn2CnLn1vhQtSjW1mee0phIBm9epcI_aem_dut4Fj7JevdDwgIANVHKtQ

MSL3 Syndrome - Data Collection Program MSL3 Syndrome patients, families, and communities are excited to participate in data collection to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information available to researchers. By generat...

12/02/2025

GIVING TUESDAY

2025 was a great year for our community and 2026 will be even bigger!

Please consider the MSL3 Syndrome Foundation for your end-of-year-giving.

Make a donation to MSL3 Syndrome Foundation to support our work spreading awareness and connecting families affected by this rare disorder.

10/19/2025

**ANNOUNCEMENT**

The MSL3 Syndrome Foundation recently enrolled in the Research Acceleration Program, which is a joint initiative between Global Genes and Notre Dame University aimed at understanding our research readiness. This initiative was created to support patient advocacy groups in understanding their research landscape, gaps, and possible roadmaps to clinical trials.

We look forward to participating in this program and the opportunity to support our community toward research progress.

10/19/2025

MSL3 Retreat 2025

10/18/2025

Hi friends ❤️

09/19/2025

Our first Retreat is just one month away.
Still time to join us in AZ!

Registration link in comments.

08/19/2025

Our retreat is just two months away!

Register here to receive details and updates as the event approaches.

We are so excited!

Register here for the first ever MSL3 Retreat in Tucson, AZ, USA from October 17-19, 2025.