Advocacy
Connect with rare disease resources to help you on your journey.
1 in 10 Americans have a rare disease.1
You’re not alone.
Explore resources and get connected with organizations to support you as you move forward.
Resources
VASCAPA
VASCAPA is a patient association that aims to help, support and inform people with vascular anomalies, while supporting research.
National Organization for Rare Disorders
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Lymphangiomatosis & Gorham’s Disease Alliance
LGDA ensures patients with complex lymphatic anomalies (CLAs) are connected to networks of care and have the comprehensive support they need from peer, medical, and scientific communities to lead longer, higher-quality lives. Together, LGDA works to advance new research and educate the medical community to help all people navigating CLAs have hope for a healthier tomorrow.
Partnerships
