Our organization partners with like-minded and mission-driven organizations that are committed to supporting the SYNGAP1 and rare disease community.
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
BIO is the world’s largest trade association representing biotechnology companies, academic institutions, state biotechnology centers and related organizations across the United States and in more than 30 other nations.
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 864 rare disease patient organizations from 70 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
The Alliance for a Stronger FDA is committed to an ongoing, multi-year effort with two specific goals, to assure that the U.S. Food and Drug Administration (the FDA)has sufficient resources to protect patients and consumers and to maintain public confidence and trust in the FDA