Aicardi Syndrome Foundation is a non-profit organization whose mission is to better the quality of life for children affected with AS through awareness and research.
ASF was incorporated in 1991 and is staffed by volunteers. ASF is funded entirely by private donations and various fundraising events. Since 1991, ASF has provided the ground work for the Aicardi Syndrome web site which links families worldwide, sponsored the biennial AS Family conference which gives a unique opportunity for families to learn about AS and how to care for an affected child through workshops/seminars and discussions with parents and professionals, awarded annual grants for ongoing research of AS, and hosted the first symposium for researchers and scientists to collaborate on identifying the AS gene.
International Foundation for CDKL5 Research is an all-volunteer organization founded by dedicated parents of children affected by CDKL5 disorder, a rare and devastating epileptic encephalopathy that begins in the first weeks of life.
IFCR is dedicated to funding global research, raising awareness and supporting families. We search out the most promising science and we have formed strong collaborations between researchers and clinicians. IFCR has founded three CDKL5 Centers of Excellence to ensure our families have access to experienced and dedicated clinicians. To learn more about CDKL5 and the International Foundation for CDKL5
Dravet Syndrome Foundation is a non-profit organization, whose mission is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families.
Dup15q Alliance is a nonprofit corporation founded under the name of IsoDicentric 15 Exchange, Advocacy and Support in 1994 by a mother and a genetic counselor with 13 families raising children with chromosome 15q duplications.
It started as support group and in 2004 it was officially incorporated into a nonprofit organization. In 2011 the organization's name was changed to Dup15q Alliance to encompass the variations of the disorder known as chromosome 15q duplication syndrome. Today, there are over 800 families from around the world affiliated with Dup15q Alliance. The organization is a volunteer run organization supported by grants, donations and many hours of volunteer effort.
Providing information and support to hypothalamic hamartoma patients, caregivers, and healthcare providers and promoting research toward early detection, improved treatments, living with HH, and cure.
The LGS Foundation is a non-profit organization dedicated to providing information about Lennox-Gastaut Syndrome while raising funds for research, services and programs for individuals living with LGS and their families.
PCDH19 Female Epilepsy
The PCDH19 Alliance was started by parents of girls affected by PCDH19 Related Epilepsy in an effort to support ongoing research into this debilitating disorder. The PCDH19 Alliance is 100% volunteer run.
Our mission is to improve the lives of children and families who are affected by PCDH19 Related Epilepsy. The Alliance focuses on raising and directing funds to scientific research with the goal of finding better, more effective treatments and, ultimately, a cure; providing information and support to affected families; and assisting the efforts of the medical community, so that no family suffers without a diagnosis and the most appropriate medical treatment.
Phelan McDermid Syndrome Foundation provides support to families affected by Phelan-McDermid Syndrome through our website, quarterly newsletter, Facebook groups, Twitter, regional gatherings, and our biennial family conference.
Our research support initiatives include a web-based patient registry and data network, grants and fellowships, scientific symposia, and connecting patients with opportunities to participate in clinical research and trials.
Tuberous Sclerosis Complex
The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. TSC is a rare genetic disorder that causes tumors to form on vital organs and is the leading genetic cause of epilepsy and autism.
The mission of the Epilepsy Foundation is to stop seizures and SUDEP, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies.