Idiopathic hypersomnia with long sleep time is a sleep disorder characterized by good quality night rest of 10 hours or more, excessive daytime drowsiness that is more or less continual with long epis...
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation surrounding idiopathic hypersomnia with long sleep time is limited due to its rarity and the complexity of sleep disorders. As fewer patients are diagnosed, systematic clinical studies become challenging, leading to gaps in understanding the condition's genetic and phenotypic characteristics. This can be frustrating for patients seeking answers, but ongoing research may provide more clarity in the future.
To navigate your condition effectively, consider seeking a sleep specialist with expertise in hypersomnia disorders. They can provide tailored management strategies and support. Additionally, the National Organization for Rare Disorders (NORD) offers resources for patients with rare conditions, which can be found at [rarediseases.org](https://rarediseases.org). Participating in clinical trials may also be an option, as they can provide access to new treatments and contribute to the understanding of this disorder. Lastly, consider reaching out to genetic counselors for guidance on genetic testing and family planning, even though no specific genetic basis has been established.
There are several orphan drugs designated for idiopathic hypersomnia with long sleep time, including mazindol, pentetrazol, pitolisant, and serdexmethylphenidate, although only sodium oxybate is currently FDA-approved. There is one active clinical trial that may offer opportunities for participation. For more information on current trials, you can visit [ClinicalTrials.gov](https://clinicaltrials.gov/search?cond=idiopathic%20hypersomnia%20with%20long%20sleep%20time). This ongoing research represents hope for better treatment options in the future.
Actionable guidance for navigating care for idiopathic hypersomnia with long sleep time
To navigate your condition effectively, consider seeking a sleep specialist with expertise in hypersomnia disorders. They can provide tailored management strategies and support. Additionally, the National Organization for Rare Disorders (NORD) offers resources for patients with rare conditions, which can be found at [rarediseases.org](https://rarediseases.org). Participating in clinical trials may also be an option, as they can provide access to new treatments and contribute to the understanding of this disorder. Lastly, consider reaching out to genetic counselors for guidance on genetic testing and family planning, even though no specific genetic basis has been established.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding idiopathic hypersomnia with long sleep time is limited due to its rarity and the complexity of sleep disorders. As fewer patients are diagnosed, systematic clinical studies become challenging, leading to gaps in understanding the condition's genetic and phenotypic characteristics. This can be frustrating for patients seeking answers, but ongoing research may provide more clarity in the future.
To navigate your condition effectively, consider seeking a sleep specialist with expertise in hypersomnia disorders. They can provide tailored management strategies and support. Additionally, the National Organization for Rare Disorders (NORD) offers resources for patients with rare conditions, which can be found at [rarediseases.org](https://rarediseases.org). Participating in clinical trials may also be an option, as they can provide access to new treatments and contribute to the understanding of this disorder. Lastly, consider reaching out to genetic counselors for guidance on genetic testing and family planning, even though no specific genetic basis has been established.
There are several orphan drugs designated for idiopathic hypersomnia with long sleep time, including mazindol, pentetrazol, pitolisant, and serdexmethylphenidate, although only sodium oxybate is currently FDA-approved. There is one active clinical trial that may offer opportunities for participation. For more information on current trials, you can visit [ClinicalTrials.gov](https://clinicaltrials.gov/search?cond=idiopathic%20hypersomnia%20with%20long%20sleep%20time). This ongoing research represents hope for better treatment options in the future.
Actionable guidance for navigating care for idiopathic hypersomnia with long sleep time
To navigate your condition effectively, consider seeking a sleep specialist with expertise in hypersomnia disorders. They can provide tailored management strategies and support. Additionally, the National Organization for Rare Disorders (NORD) offers resources for patients with rare conditions, which can be found at [rarediseases.org](https://rarediseases.org). Participating in clinical trials may also be an option, as they can provide access to new treatments and contribute to the understanding of this disorder. Lastly, consider reaching out to genetic counselors for guidance on genetic testing and family planning, even though no specific genetic basis has been established.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding idiopathic hypersomnia with long sleep time is limited due to its rarity and the complexity of sleep disorders. As fewer patients are diagnosed, systematic clinical studies become challenging, leading to gaps in understanding the condition's genetic and phenotypic characteristics. This can be frustrating for patients seeking answers, but ongoing research may provide more clarity in the future.
To navigate your condition effectively, consider seeking a sleep specialist with expertise in hypersomnia disorders. They can provide tailored management strategies and support. Additionally, the National Organization for Rare Disorders (NORD) offers resources for patients with rare conditions, which can be found at [rarediseases.org](https://rarediseases.org). Participating in clinical trials may also be an option, as they can provide access to new treatments and contribute to the understanding of this disorder. Lastly, consider reaching out to genetic counselors for guidance on genetic testing and family planning, even though no specific genetic basis has been established.
There are several orphan drugs designated for idiopathic hypersomnia with long sleep time, including mazindol, pentetrazol, pitolisant, and serdexmethylphenidate, although only sodium oxybate is currently FDA-approved. There is one active clinical trial that may offer opportunities for participation. For more information on current trials, you can visit [ClinicalTrials.gov](https://clinicaltrials.gov/search?cond=idiopathic%20hypersomnia%20with%20long%20sleep%20time). This ongoing research represents hope for better treatment options in the future.
Actionable guidance for navigating care for idiopathic hypersomnia with long sleep time
To navigate your condition effectively, consider seeking a sleep specialist with expertise in hypersomnia disorders. They can provide tailored management strategies and support. Additionally, the National Organization for Rare Disorders (NORD) offers resources for patients with rare conditions, which can be found at [rarediseases.org](https://rarediseases.org). Participating in clinical trials may also be an option, as they can provide access to new treatments and contribute to the understanding of this disorder. Lastly, consider reaching out to genetic counselors for guidance on genetic testing and family planning, even though no specific genetic basis has been established.
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 31, 2026
Consider asking your healthcare providers these condition-specific questions
European rare disease database
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.
Organizations with orphan designations or approved therapies for this disease