Our organization partners with like-minded, mission-driven non-profit organizations that are committed to supporting the SYNGAP1 and rare disease community.
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.
Beyond the Diagnosis unites art and science to inspire research and innovation of treatments for people living with orphan and neglected diseases.
Biotechnology Innovation Organization (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 countries.
The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
EURODIS-Rare Diseases Europe, is a unique, nonprofit 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.
Global Genes was born - to connect, empower and inspire the rare disease community.
The Haystack Project is committed to the Rare and Ultra Rare Disease Community. It brings together Innovators, Patients and Caregivers to educate and advocate for policies that recognize the unique circumstances of extremely rare conditions and treatments.
Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations.
Simons Searchlight includes leading researchers, families, and individuals. Each of us is dedicated to advancing the science of genetic changes related to autism.