We are working to increase the government's investment in research toward a cure, educate decision-makers about port wine birthmark conditions and improve access to effective treatments. Our success is dependent upon the involvement of people like you. It's easy to make a difference - take action today!

In 2001, Kaelin Ball testified before the Subcommittee on Labor, Health & Human Services, US House of Representatives. Her voice was our first "whisper" on the hill. Since then, other partners have joined in her advocacy endeavors.s Now, we need your voice more than ever!

Tips & Tools for Advocates		Insurance
These resources will help you to be an effective advocate for yourself and your fellow partners		Learning to be your own best advocate is critical when choosing and working with an insurance company.
Advocacy myths & misconceptions Tips for meeting with your members of Congress Tips for writing your members of Congress Write to your Representative or Senator		The Medical Necessity for Treatment of Port Wine Birthmarks Frequently Asked Questions Patient Assistance Programs How to Prevent and Solve Hospital Billing Problems

Useful Web Sites		Disability & Discrimination
National Institutes of Health THOMAS: legislative information from the Library of Congress National Institute of Arthritis and Musculoskeletal and Skin Diseases National Organization for Rare Disorders National Institute of Neurological Disorders & Stroke National Eye Institute Office of Rare Disease		Medicare & Medicaid Social Security Disability Insurance (SSDI) Supplemental Security Income (SSI) Americans with Disabilities Act (ADA)