About ACTA2 Alliance

ACTA2 Alliance is an parent-led international organization dedicated to advancing research, improving care, and connecting families affected by ACTA2-related conditions, including Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS).


We bring together patients, clinicians, and researchers to accelerate knowledge and support a global community facing rare diseases.

Our Mission

To accelerate research, improve clinical understanding, and support individuals and families affected by MSMDS and ACTA2-related conditions.


We work to ensure that no family faces this diagnosis without access to information, connection, and a path forward.

Our Vision

A future where MSMDS and ACTA2-related conditions are better understood, diagnosed earlier, and effectively treated.


We believe in a world where collaboration drives progress and where every patient has access to the care and knowledge they need.

Our Story

ACTA2 Alliance was created in 2018 by MSMDS families as a response to a shared need: better understanding, stronger connections, and real progress in a field where information was scarce.


What began as a small network of families and clinicians has grown into an international effort to bring visibility to MSMDS and ACTA2-related conditions.


Today, the organization continues to grow through collaboration, connecting people, supporting research, and helping build the foundations for future treatments.

How We Work

ACTA2 Alliance operates through the collaboration of families, clinicians, researchers, and partner organizations around the world.


Our structure brings together leadership, scientific guidance, and global partnerships to strengthen research and support the community.


ACTA2 Alliance is built on collaboration.


If you would like to contribute, collaborate, or get involved in our work, we would love to hear from you.

Get involved with ACTA2 Alliance

Explore more about ACTA2 Alliance

Scientific & Medical Advisory Board
Partners & Collaborations
International Conferences