A neonatal/infantile epilepsy syndrome characterized by frequent drug-resistant seizures that begin ≤3 months of age, with abnormal interictal EEG and neurological examination. In up to 80% of patient...
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation for early-infantile DEE is limited primarily due to its rarity and the recent identification of its genetic underpinnings. As this condition affects a small population, systematic clinical studies have been scarce, making it challenging to compile comprehensive clinical data. The ongoing characterization of this condition aims to improve understanding and treatment options.
To navigate early-infantile DEE, consider consulting a pediatric neurologist with expertise in epilepsy syndromes. Genetic counseling may also be beneficial given the known genetic components associated with this condition. You can find a genetic counselor through the National Society of Genetic Counselors at findageneticcounselor.com. Additionally, participating in clinical trials could provide access to cutting-edge research and potential treatments. Keep an eye on ClinicalTrials.gov for opportunities relevant to your situation.
Currently, there are 37 active clinical trials investigating various aspects of early-infantile DEE. While there are no orphan drugs designated for this condition, the trials may explore potential treatment options and interventions. For more information on these trials, you can visit ClinicalTrials.gov and search for early-infantile DEE.
Actionable guidance for navigating care for early-infantile DEE
To navigate early-infantile DEE, consider consulting a pediatric neurologist with expertise in epilepsy syndromes. Genetic counseling may also be beneficial given the known genetic components associated with this condition. You can find a genetic counselor through the National Society of Genetic Counselors at findageneticcounselor.com. Additionally, participating in clinical trials could provide access to cutting-edge research and potential treatments. Keep an eye on ClinicalTrials.gov for opportunities relevant to your situation.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for early-infantile DEE is limited primarily due to its rarity and the recent identification of its genetic underpinnings. As this condition affects a small population, systematic clinical studies have been scarce, making it challenging to compile comprehensive clinical data. The ongoing characterization of this condition aims to improve understanding and treatment options.
To navigate early-infantile DEE, consider consulting a pediatric neurologist with expertise in epilepsy syndromes. Genetic counseling may also be beneficial given the known genetic components associated with this condition. You can find a genetic counselor through the National Society of Genetic Counselors at findageneticcounselor.com. Additionally, participating in clinical trials could provide access to cutting-edge research and potential treatments. Keep an eye on ClinicalTrials.gov for opportunities relevant to your situation.
Currently, there are 37 active clinical trials investigating various aspects of early-infantile DEE. While there are no orphan drugs designated for this condition, the trials may explore potential treatment options and interventions. For more information on these trials, you can visit ClinicalTrials.gov and search for early-infantile DEE.
Actionable guidance for navigating care for early-infantile DEE
To navigate early-infantile DEE, consider consulting a pediatric neurologist with expertise in epilepsy syndromes. Genetic counseling may also be beneficial given the known genetic components associated with this condition. You can find a genetic counselor through the National Society of Genetic Counselors at findageneticcounselor.com. Additionally, participating in clinical trials could provide access to cutting-edge research and potential treatments. Keep an eye on ClinicalTrials.gov for opportunities relevant to your situation.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for early-infantile DEE is limited primarily due to its rarity and the recent identification of its genetic underpinnings. As this condition affects a small population, systematic clinical studies have been scarce, making it challenging to compile comprehensive clinical data. The ongoing characterization of this condition aims to improve understanding and treatment options.
To navigate early-infantile DEE, consider consulting a pediatric neurologist with expertise in epilepsy syndromes. Genetic counseling may also be beneficial given the known genetic components associated with this condition. You can find a genetic counselor through the National Society of Genetic Counselors at findageneticcounselor.com. Additionally, participating in clinical trials could provide access to cutting-edge research and potential treatments. Keep an eye on ClinicalTrials.gov for opportunities relevant to your situation.
Currently, there are 37 active clinical trials investigating various aspects of early-infantile DEE. While there are no orphan drugs designated for this condition, the trials may explore potential treatment options and interventions. For more information on these trials, you can visit ClinicalTrials.gov and search for early-infantile DEE.
Actionable guidance for navigating care for early-infantile DEE
To navigate early-infantile DEE, consider consulting a pediatric neurologist with expertise in epilepsy syndromes. Genetic counseling may also be beneficial given the known genetic components associated with this condition. You can find a genetic counselor through the National Society of Genetic Counselors at findageneticcounselor.com. Additionally, participating in clinical trials could provide access to cutting-edge research and potential treatments. Keep an eye on ClinicalTrials.gov for opportunities relevant to your situation.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
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.
Organizations with approved therapies for this disease
No approved therapies yet
Research is ongoing — 2 companies have orphan drug designations for this disease
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.