Mission & Vision
Patient voice is central to everything we do.
It’s the lifeline through all our work. As such, we will engage patients whenever possible across our work for their input and perspective.
Our mission
We unite patients, families, clinicians, and researchers to accelerate understanding, expand access to care, and drive breakthroughs for isolated lymphatic malformations and complex lymphatic anomalies so no one faces this journey alone.
Our values
Patient first, always
Every decision starts with the real-life experience of patients and families.
Clarity over complexity
We translate rare, complex conditions into information people can actually use.
Progress through partnership
We believe breakthroughs happen when patients, researchers, and clinicians move together.
Substantial hope
We don’t offer empty optimism. We build real pathways to better outcomes.
Global community
Rare should not mean alone. We connect a worldwide community.
Our story
It all started with one patient who refused to accept silence.
When Jana Sheets was diagnosed with a rare, life-threatening lymphatic condition, she searched for answers and found almost none. No clear information. No community. No roadmap.
So she built one.
What began as a mission to help others feel less alone has grown into a global movement. Today, the Lymphatic Malformation Alliance connects patients, caregivers, researchers, and clinicians around a shared purpose: to bring clarity where there is confusion, connection where there is isolation, and progress where there has been too little.
Because rare should never mean invisible. And no one should have to navigate a lymphatic malformation diagnosis alone.
