SATB2 Gene Foundation
The SATB2 Gene Foundation, Inc. was established to enrich the lives of individuals with SATB2-associated syndrome, including those diagnosed with the condition and their families, through support, research and education. Our mission will be met by:
We are pleased to share our 2023-2025 Strategic Plan that will help serve as our roadmap.
Board of Directors
Medical and Scientific Advisory Board
The SATB2 Gene Foundation is an international organization that supports all families living around the globe, through a unified approach to ensure that we succeed in achieving our mission and vision for all families living with SATB2-associated syndrome. Together, we continue to collaborate and provide support of our families, educating the world about SAS, and furthering research.
SATB2 Connect (Australia, New Zealand, and Asia Pacific region)
Association Francaise Du SATB2 (France)
SATB2 Italia associazione onlus (Italy)
SATB2 Stichting Nederland en Belgie (Netherlands and Belgium)
Asociación del Síndrome Asociado al SATB2-SAS (Spain)
SATB2 Gene Trust UK
The SATB2 Gene Foundation is a proud member of the Global Genes Foundation Alliance and COMBINEDBrain.
Global Genes Foundation Alliance is an organization who advocates, partners and collaborators who are relentless in our efforts to affect change. They do this to eliminate the daily challenges for 1 in 10 people affected by rare disease. They empower patients, build communities & drive forward momentum for rare disease globally. Global Genes’ mission is to connect, empower and inspire the rare disease community. They envision a globally connected community equipped to eliminate the challenges of rare disease.
COMBINEDBrain (Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders) is a consortium led by patient advocacy foundations, working with the clinicians, researchers and pharmaceutical firms that are developing treatments for the disorders they represent. They are devoted to speeding the path to clinical treatments for people with severe rare genetic non-verbal neurodevelopmental disorders by pooling efforts, studies and data.
EURODIS is a non-governmental patient-driven alliance of patient organisations representing 962 rare disease patient organizations in 73 countries. EURODIS seeks to improve the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and medicines development, facilitating networking amongst patient groups, raising awareness, and many other actions designed to reduce the impact of rare disease on the lives of patients and family.
National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.