MSL3 Syndrome

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.

06/25/2025

Considering joining us for the MSL3 Syndrome Retreat in Tucson, AZ, October 17-19?

We hope you can attend and we want you to know:

This is a low-pressure event! Just a chance to meet other families in a welcome and accessible environment. Join for the portions you feel comfortable with and know you are with other families who understand this MSL3 life.

Tucson in October is beautiful! There are tons of options of where to stay and we can help you choose some special sights to take in, if you are up for it.

Check out this site for ideas of what to do during your visit. https://www.visittucson.org

Please reach out with questions. We want to help make this first retreat a success.

With 350 days of sunshine a year, Tucson, Arizona is the place to vacation! Find trip planning information on hotels, events, restaurants and things to do.

05/07/2025

Our community has grown to around 100 identified families and we are excited to plan our first-ever retreat in Tucson, Arizona this October 2025.

Friday October 17- Family friendly happy hour

Saturday October 18-Family party day (swim and BBQ)

Sunday October 19-Goodbye Brunch

We look forward to creating an event where our families can meet, connect, play and rest together in a safe, accessible and accommodating environment.

05/03/2025

Happy MSL3 Day 2025!

We’ll be sharing updates all week including:

Details about our first-ever family retreat October 17-19, 2025 in Tucson, Arizona, USA.

News from our Science Advisory Committee regarding ongoing research and data-collection.

Plans toward a summit in 2026-2027 WITH our researchers.

Today we celebrate our ultra-rare status and the community we’ve created to support our families along this journey.

Can’t wait to see those MSL3 smiles!

05/02/2025

TOMORROW is MSL3 Day!

Can't wait to see the celebrations!

And we are looking forward to sharing some updates for our community ❤