PatientStrong™ is our general fund and supports our mission in these ways:

Patient and Community

  • 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

Medical Research

  • 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.