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.
Patients with complex lymphatic anomalies have the support they need from peer, medical, and scientific communities to lead longer, higher-quality lives.
We connect patients and families to peers and networks of care, partner to advance new research, and educate the medical community to help all people navigating complex lymphatic anomalies have hope for a healthier tomorrow.
Founded by Jana K. Sheets, a patient, in 2007, the LGDA is a 501(c)(3) nonprofit incorporated in the United States and serving a worldwide community of patients, families, researchers, and clinicians.
In her early teens, Jana was shaken with the grim acceptance that she had an extremely rare, life-threatening disease. For more than a decade, she searched for information, seeking to talk with medical professionals who knew something – anything! – about her disease. She searched for doctors and researchers by combing through literature in medical journals to learn about her disease, and how she could deal with the threat to her life.
She found little information and no research. Feeling alone in her burden, she yearned to find and speak with other patients with her orphan disease. Jana decided that she would establish a foundation to help others, with a similar diagnosis, deal with the fear of the unknown and abandonment. Though she was not well in her remaining years, with the encouragement of her husband, Eric, her sister Megan, and her parents, in July of 2007, she launched the first foundation “to give hope and find help” for patients around the world with Complex Lymphatic Anomalies (CLA).
Jana was also a Founding Member in a small group of lung transplant recipients at Duke University Medical Center who founded the Lung Transplant Foundation.