Juvenile Huntington disease (JHD) is a form of Huntington disease (HD), characterized by onset of signs and symptoms before 20 years of age.
Comprehensive, easy-to-understand information about this condition
How we create this content →Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
The limited documentation surrounding juvenile Huntington disease is primarily due to its extreme rarity, affecting fewer than 10 individuals per million. This rarity restricts the ability to conduct extensive clinical studies and collect comprehensive data on the condition. Additionally, the overlap of symptoms with other neurological disorders complicates the clinical characterization of JHD.
To navigate juvenile Huntington disease, consider consulting a neurologist with expertise in movement disorders or hereditary ataxias. While there are no specific patient organizations identified, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, inquire about participation in clinical trials, which may offer access to new therapies and contribute to research. Genetic counseling may also be beneficial, especially considering the unclear inheritance pattern.
There are several orphan drugs designated for the treatment of juvenile Huntington disease, including d6-tetrabenazine and deutetrabenazine, which are FDA-approved. Additionally, there are drugs in development such as Tominersen and various antisense oligonucleotides targeting mutant huntingtin RNA. Currently, there are 2 active clinical trials investigating treatments for JHD. For more information on these trials, you can visit ClinicalTrials.gov at this link: https://clinicaltrials.gov/search?cond=juvenile%20Huntington%20disease.
Actionable guidance for navigating care for juvenile Huntington disease
To navigate juvenile Huntington disease, consider consulting a neurologist with expertise in movement disorders or hereditary ataxias. While there are no specific patient organizations identified, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, inquire about participation in clinical trials, which may offer access to new therapies and contribute to research. Genetic counseling may also be beneficial, especially considering the unclear inheritance pattern.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.