Patient Advocacy Groups
K-T Support Group
The K-T Support Group serves as a vital lifeline for families and professionals navigating K-T/CLVM, empowering the community through education, connection, and a commitment to bridging the gap between today’s patient care and tomorrow’s cures.
LDGA
LGDA ensures patients with complex lymphatic anomalies (CLAs) have the comprehensive support they need from peer, medical, and scientific communities to lead longer, higher-quality lives.
CLOVES Syndrome Community
The vision of CLOVES Syndrome Community is an improved quality of life for those living with CLOVES syndrome. Our mission is to support, educate, empower and improve the lives of those affected by CLOVES syndrome.
M-CM Network
We provide opportunities for education and awareness among families and the medical community with comprehensive and up-to-date information about M-CM. We work with affected families to advance research and understanding about M-CM to improve the lives of patients.
Parkes Weber Syndrome Support Group
The Parkes Weber Support Group is a specialized branch of the K-T Support Group dedicated to the unique challenges of extra-cranial high-flow vascular malformations (AVM). Our mission is to provide PWS families with expert-led education and peer connections, ensuring that the specific medical and emotional demands of Parkes Weber are met with targeted resources and a direct pathway to the latest clinical research.
PROJECT FAVA
Empowering the fibro-adipose vascular anomaly (FAVA) community through outreach, education, and connection to researchers, medical organizations, and one another.