Patient and family travel grants to attend the biannual CCDS Symposium
CCDS Family and Physician Symposium costs
Education and Advocacy
ACD attendance of medical conferences and rare disease seminars
Speaking at FDA public forums
Providing up-to-date online CCDS resources
Producing educational videos and materials for the public and allied healthcare professionals
Partnering with other rare disease advocacy groups like the National Organization for Rare Disorders (NORD) and Global Genes to increase CCDS visibility
Advocating for newborn screening at the state and national levels
Building a secure and comprehensive international patient registry
Funding research grants
Collaborating with medical professionals, drug developers, the Advisory Committee for Heritable Disorders in Newborns and Children, the National Institutes of Health (NIH), the Centers for Disease Control (CDC), and several others on research efforts related to early detection and potential therapeutics
ACD is a non-profit charitable organization and we rely on the generosity of our donors to continue these efforts. We are committed to building strength and changing lives in our patient community.
Please give today to help change the future of CCDS.