About Lyphangiomatosis and Gorham Disease Alliance
Supporting patients is at the root of everything we do.
We will help patients and their families learn more about their diagnoses and how to navigate CLA by providing them with educational resources and materials. We will help them get the medical, social, and emotional support they need by connecting them to peers and professionals with empathy and understanding.
We are uniquely positioned to unite the scientific, medical, and patient communities to develop, pilot, and implement patient-centered norms for care. We expect this will increase awareness of CLA and best practices for diagnosis and treatment, and drastically improve the quality-of-care patients receive globally. We will ensure that the patient community has a voice in shaping patient-centered research outcomes.