Coalition to Cure Calpain 3 (C3) has joined the National Organization for Rare Diseases (NORD) as a Platinum Member. This level of membership represents the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug development, medical education, and registries.
NORD is an independent advocacy organization representing the approximately 25-30 million Americans affected by a rare disease. NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, and advancing medical research. Over 300 disease-specific patient organizations are NORD Member Organizations.
As a Platinum Member of NORD, C3 will benefit from NORD’s established presence as an advocate for the rare disease community. NORD provides a wealth of resources related to best practices for rare disease patient groups and helps member organizations promote their programs.
“C3 is pleased to be approved as a Platinum NORD member organization,” says Dr. Jennifer Levy, C3 Scientific Director. “We look forward to working closely with NORD to represent the needs of people living with rare diseases including LGMD2A/R1.”
