Our Partnerships

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.  

Simons Searchlight includes leading researchers, families and individuals. Each of us is dedicated to advancing the science of genetic changes related to autism.

RehabMetrics mission is to capture the best metric and apply meaningful, actionable data analysis to advance patient care and the field of rehabilitation.

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.

Beyond the Diagnosis unites art and science to inspire research and innovation of treatments for people living with orphan and neglected diseases. 

ThinkGenetic locates individuals with diagnosed and undiagnosed genetic diseases using artificial intelligence (AI) solutions. 

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.

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 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.

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.

The American Brain Coalition, a nonprofit organization, seeks to advance the understanding of the functions of the brain, and to reduce the burden of brain disorders through public advocacy.

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

Global Genes was born – to connect, empower and inspire the rare disease community.

“Building Bridges of Hope to A Cure”

Home Office

15319 Redbud Berry Way Cypress, Texas 77433

(240) 347-0302

Regional Office

1012 14th Street NW Suite 500 Washington D.C. 20005