ACTA2-related conditions are rare genetic disorders caused by changes in the ACTA2 gene, which affects smooth muscle cells throughout the body. One of the most severe ACTA2-related conditions is Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS), which can affect the blood vessels, heart, lungs, brain and other organs.
LEARN MORE ABOUT ACTA2 CONDITIONSA new diagnosis can feel overwhelming.
We can help you understand the condition, connect with the right specialists, and find support from other families.
The MSMDS Patient Registry is a secure global platform hosted by Sanford CoRDS designed to improve understanding of the condition and support the development of future treatments. Open to all MSMDS patients (ACTA2, MYH11 and related conditions). Secure and confidential. Available in multiple languages
Family Circle is a private monthly online meeting for families affected by ACTA2 and MSMDS. It is a safe space to connect, share experiences, and support one another.
Access clinical resources, guidelines, and reference materials related to ACTA2 and MSMDS.
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.
Read more
In diseases this rare, every data point, every medical history, and every study participant moves the entire community forward.
The ACTA2 Alliance Patient Registry collects medical information from individuals with MSMDS or ACTA2 mutations to support research and improve understanding of the disease. Participation can be done remotely and contributes to building a global knowledge base.
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. View more
Co-founder & Secretary
Parent advocate, US
President & Co-founder
Parent advocate, US
Chair, Scientific & Medical Advisory Committee
Chair, Fundraising
Parent advocate, Spain
Chair, Communications
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.
© 2026 ACTA2 Alliance, All Rights Reserved.
