To ensure no one affected by ACTA2 feels unseen or alone by building a compassionate community, amplifying real life experiences, and advancing awareness, research and support.
What is MSMDS?
MSMDS is a rare genetic condition that affects the smooth muscle in the body, but behind every diagnosis is a person, a family, and a story. Ours is Lily.
It can impact multiple systems in the body, often in complex and unpredictable ways, meaning those affected may face ongoing medical challenges and uncertainty.
Because it is so rare, many families feel isolated, navigating a condition few have heard of. But they are not alone. By sharing experiences and building understanding, we can bring visibility to MSMDS, support those living with it, and help drive the research and awareness needed for better care and brighter futures.
You are twice as likely to be struck by lightning, than to receive a diagnosis of MSMDS.
Who are ACTA2 Alliance UK?
We are a UK-based charity, created from the urgent need to bring awareness to MSMDS, a rare genetic condition that, for many, begins with more questions than answers.
When our child was diagnosed, we found ourselves navigating the unknown, searching for clarity in the dark.
In the US, ACTA2 Alliance has already built a powerful community and driven meaningful research.
We are here to build on that momentum, growing awareness in the UK, strengthening global collaboration, and helping accelerate the research and support that families like ours depend on.
Lily's Story
Imagine being told your child has an ultra-rare genetic condition, one so uncommon that only a handful of cases exist worldwide. Imagine navigating the unknown, where even medical professionals are still learning, and where your family must find answers in the dark.
Lily’s story is our story.
Our mission is to turn our lived experience into meaningful, lasting change. Raising awareness, advancing research toward better treatments and, ultimately, a cure, while building a compassionate community where no one affected by this condition feels overlooked or alone.
How can you help?
Early diagnosis is critical. Raising awareness of the condition, allows life-saving interventions in infants and children. Your support will allow us to work with medical professionals to help them understand the early signs of MSMDS and other ACTA2 related conditions.
To help us grow the community you can sign up to our newsletter below or follow us on our social channels. We aim to provide critical funding to leading institutions exploring CRISPR, MicroRNA and viral-vector treatments to address ACTA2 gene mutations directly.
Your donations support the logistical framework required for global clinical trials, including patient registries and worldwide coordination.
Join our community and follow our journey
Being part of a community helps carry the weight together. We share stories and support one another on Instagram, Facebook and TikTok.
Follow our journey and be part of something that connects, supports, and reminds you , you’re not alone.
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