ACTA2 Alliance is a 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.
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.
Read morediagnosed 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.
Read Moreas 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.
Read MoreOur 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
ACTA2 Alliance is led by a group of individuals deeply committed to advancing research, supporting families, and strengthening the global response to MSMDS and ACTA2-related conditions.
Chair, Scientific & Medical Advisory Committee
Chair, Fundraising
Parent advocate, Spain
Parent advocate, US
Parent advocate, US
Parent advocate: Estonia, Ireland
Parent advocate, Italy
Parent advocate, US
ACTA2 Alliance is built on the dedication of individuals who contribute their time, knowledge, and experience to support families and advance research.
We are always looking for people who want to contribute their skills, experience, and time to support the MSMDS and ACTA2 community.
Whether you are a professional, a researcher, or a family member, there are many ways to get involved.
*This content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Should you require medical advice, please contact a qualified medical professional who is familiar with Multisystemic Smooth Muscle Dysfunction Syndrome.
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