Living with MSMDS or an ACTA2-related condition can feel overwhelming, especially at the beginning.
This space is designed to help you understand the condition, find the right support, and connect with others who share a similar journey.
Learning about ACTA2 & MSMDS is often the first step toward feeling more in control.
Understanding how the condition works, how it may affect the body, and what to expect can help you navigate decisions and conversations with greater confidence.
Connecting Your Medical Team With Experienced MSMDS and ACTA2 Teams.
ACTA2 experts emphasize the importance of communication between local medical teams and specialists with experience in ACTA2-related conditions and MSMDS. These connections can help local clinicians discuss complex cases, share knowledge and benefit from the experience of teams familiar with this ultra-rare conditions.
To make this process easier, ACTA2 Alliance, together with our Scientific and Medical Advisory Board (SMAB), has prepared a letter designed to help introduce international local medical teams to experienced ACTA2 and MSMDS specialists and facilitate direct clinical communication.
If you would like to receive this letter, or if you need help connecting your medical team with an experienced ACTA2 center, please use our contact form or email msmds@acta2alliance.org.
ACTA2-related Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS) is an exceptionally rare condition. Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS) is an ultra-rare genetic disease – less than 100 clinical cases worldwide.
Families can feel isolated, particularly when they are the only known case in their country.
Our global patient map helps connect families, raise awareness and show the worldwide reach of the MSMDS community.
Countries with MSMDS today: Australia, Belgium, Brazil, Canada, China, South Korea, Denmark, Germany, Spain, United States, Finland, France, Greece, India, Ireland, Israel, Italy, Japan, Lithuania, Netherlands, United Kingdom, Sweden, Switzerland and Turkey.
Fill out the form with the information you’d like to share and help us continue building this network of families
Talking to others who understand your experience can make a powerful difference.
Across the ACTA2 and MSMDS community, families connect regularly to share experiences, ask questions, and support one another. These are some ways you can connect with other families and the wider community.
A regular space where families come together to share experiences, ask questions, and support one another in a safe and understanding environment.
A private space where families affected by MSMDS can connect, share experiences, and support each other.
A broader community for individuals and families affected by ACTA2-related conditions, offering connection, shared knowledge, and peer support.
A unique opportunity to meet families, clinicians, and researchers from around the world, sharing experiences, learning together, and building lasting connections within the community.
Families play a key role in advancing knowledge and improving future care.
By sharing information and participating in research initiatives, you can help accelerate understanding and bring new treatments closer
We walk it alongside you, offering support, sharing knowledge, and keeping you connected every step of the way.
To make sure you don’t miss a thing, we invite you to join our mailing list, our official communication channel, where we share the latest updates on research and care as they happen.
You will also receive a short welcome series after subscribing, with links to family pages and key resources to help you get started.
*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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