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About the Foundation

The CHARGE Syndrome Foundation, Inc. is a 501(c)(3) charitable organization that is governed by a Board of volunteers composed of up to 12 members. The majority of the Board must be comprised of individuals who have a family member with CHARGE syndrome. Special advisors to the Board provide assistance in program development. The day-to-day management of the Foundation is carried out by the board and two part-time employees. The primary goals of the Foundation include: growing our outreach and support programs; increasing our knowledge base; promoting awareness; building networks and partnerships; and investing in leading-edge research.



Learn more about one of the major activities of the Foundation—our biennial international conference.





Since 2012, the Foundation has sponsored fifteen research grants and is looking to continue sponsoring grants looking at new biomedical research into the etiology, genetic and molecular mechanisms and treatment of CHARGE syndrome or new research into clinical and medical diagnosis and treatment of CHARGE syndrome. Read more


Get Involved


Interested in becoming involved? There are many ways to become involved and support the work of the Foundation. Read more