A rare neonatal epilepsy syndrome characterized by seizures without specific underlying etiology, occurring during the first days of life in infants with an otherwise normal neurological state and no ...
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation surrounding benign idiopathic neonatal seizures is limited primarily due to its rarity, affecting fewer than 1 in 10,000 live births. This low prevalence results in fewer systematic clinical studies, making it challenging to gather comprehensive data. Additionally, the condition's benign nature and favorable outcomes may lead to underreporting in clinical settings, further complicating our understanding.
To navigate benign idiopathic neonatal seizures, it is crucial to seek a pediatric neurologist with expertise in neonatal epilepsy. They can provide tailored care and management strategies. Additionally, consider exploring resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov for further information. While there are no specific patient organizations identified, staying connected with healthcare providers can help you access potential registry or natural history study opportunities as they arise.
Currently, there are several orphan drugs designated for the treatment of benign idiopathic neonatal seizures, including levetiracetam and topiramate, although no treatments have been FDA-approved specifically for this condition. Clinical trials are not available at this time, but ongoing research may lead to future treatment options. For updates on clinical trials, you can search on ClinicalTrials.gov.
Actionable guidance for navigating care for benign idiopathic neonatal seizures
To navigate benign idiopathic neonatal seizures, it is crucial to seek a pediatric neurologist with expertise in neonatal epilepsy. They can provide tailored care and management strategies. Additionally, consider exploring resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov for further information. While there are no specific patient organizations identified, staying connected with healthcare providers can help you access potential registry or natural history study opportunities as they arise.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding benign idiopathic neonatal seizures is limited primarily due to its rarity, affecting fewer than 1 in 10,000 live births. This low prevalence results in fewer systematic clinical studies, making it challenging to gather comprehensive data. Additionally, the condition's benign nature and favorable outcomes may lead to underreporting in clinical settings, further complicating our understanding.
To navigate benign idiopathic neonatal seizures, it is crucial to seek a pediatric neurologist with expertise in neonatal epilepsy. They can provide tailored care and management strategies. Additionally, consider exploring resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov for further information. While there are no specific patient organizations identified, staying connected with healthcare providers can help you access potential registry or natural history study opportunities as they arise.
Currently, there are several orphan drugs designated for the treatment of benign idiopathic neonatal seizures, including levetiracetam and topiramate, although no treatments have been FDA-approved specifically for this condition. Clinical trials are not available at this time, but ongoing research may lead to future treatment options. For updates on clinical trials, you can search on ClinicalTrials.gov.
Actionable guidance for navigating care for benign idiopathic neonatal seizures
To navigate benign idiopathic neonatal seizures, it is crucial to seek a pediatric neurologist with expertise in neonatal epilepsy. They can provide tailored care and management strategies. Additionally, consider exploring resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov for further information. While there are no specific patient organizations identified, staying connected with healthcare providers can help you access potential registry or natural history study opportunities as they arise.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding benign idiopathic neonatal seizures is limited primarily due to its rarity, affecting fewer than 1 in 10,000 live births. This low prevalence results in fewer systematic clinical studies, making it challenging to gather comprehensive data. Additionally, the condition's benign nature and favorable outcomes may lead to underreporting in clinical settings, further complicating our understanding.
To navigate benign idiopathic neonatal seizures, it is crucial to seek a pediatric neurologist with expertise in neonatal epilepsy. They can provide tailored care and management strategies. Additionally, consider exploring resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov for further information. While there are no specific patient organizations identified, staying connected with healthcare providers can help you access potential registry or natural history study opportunities as they arise.
Currently, there are several orphan drugs designated for the treatment of benign idiopathic neonatal seizures, including levetiracetam and topiramate, although no treatments have been FDA-approved specifically for this condition. Clinical trials are not available at this time, but ongoing research may lead to future treatment options. For updates on clinical trials, you can search on ClinicalTrials.gov.
Actionable guidance for navigating care for benign idiopathic neonatal seizures
To navigate benign idiopathic neonatal seizures, it is crucial to seek a pediatric neurologist with expertise in neonatal epilepsy. They can provide tailored care and management strategies. Additionally, consider exploring resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov for further information. While there are no specific patient organizations identified, staying connected with healthcare providers can help you access potential registry or natural history study opportunities as they arise.
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.
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.
Organizations with orphan designations or approved therapies for this disease
Accord Healthcare Inc.
Other
Genus Lifesciences Inc.
Other
Hikma Pharmaceuticals USA Inc.
Other
Nivagen Pharmaceuticals, Inc.
Other
PrevEP Inc.
Other
Renaissance SSA, LLC
Other
Sun Pharmaceutical Industries, Inc.
Other
University of California
Other