Synonyms: Rare NSID
Rare non-syndromic intellectual disability is a rare hereditary neurologic disease characterized by early-onset cognitive impairment as a sole disability. The disease may be associated with autism epilepsy and neuromuscular deficits.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version August 2026
Newly diagnosed with
Rare non-syndromic intellectual disability?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
Access to Life NGO
Access to Life is Ukraine’s first patient advocacy organization for rare genetic epilepsies, anchored in Dravet syndrome and SCN1A-related conditions. We support 600+ families nationwide, advocate for a national clinical protocol and drug access, and are building Ukraine’s National Patient Resource Centre and Patient Registry for genetic epilepsies.
GRI-UK
Our mission is to raise awareness of GRI gene disorders, to advocate for research, to support and empower affected individuals and families, and to build a community where everyone feels welcome and valued.
Genetic Epilepsy Team Australia
Collaboration of research and care
International SCN8A Alliance
To improve the quality of life and availabile treatments for patients and caregivers of those living with SCN8A related disorders. Convene and coordinate research and advocacy efforts.
Legacy Bridges Foundation, Inc
The Legacy Bridges Foundation, Inc. is a 501(c)3 non-profit organization founded to bridge the gap to support, educate and advocate for individuals, families and caregivers of those living with epilepsy and other seizure related disorders. The Legacy Bridges Foundation, Inc. is dedicated to helping champions live a sustainable life through participation of essential supportive programs and service
Rare Epilepsy Network (REN)
Improving outcomes of people with rare epilepsies through an innovative collaborative infrastructure that drives urgent, patient-centered research, educaiton and advocacy.
Uganda Alliance of Patients Organization
Supporting patients to access quality, safe and patient-centered healthcare services.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.