PRIMARY CARE
Recommendation 1
Specialist referrals and medication therapy
Recommendation 1
Suggestive findings and biallelic pathogenic variants in ELP1 (formerly IKBKAP) identified by molecular genetic testingRecommendation 1
Suggestive findings and biallelic pathogenic variants in ELP1 (formerly IKBKAP) identified by molecular genetic testingRecommendation 1
Diazepam, metoclopramide, and chloral hydrate. Artificial tears may be needed to lubricate the eyes.Recommendation 1
Specialist referrals and medication therapyRecommendation 1
No specific physicians specialize in this condition but NORD recommends various rare disease clinics. Referral to Medical Genetics Department, if available. Initial virtual care is also available through organizations like TeleRare Health.Recommendation 1
Various clinical studies currently recruitingFollow to receive regular updates to the latest research development on this disease via email newsletter.