Family Education & Support

The Problem: Newly diagnosed families encounter outdated information, worst-case scenarios in medical literature, and no peer support network.

Our Solution:

• Centralized, accurate information hub with family-friendly resources

• Family-to-family mentorship connecting newly diagnosed families with experienced ones

• Comprehensive resource guides for navigating therapies, vision care, and developmental support

• Regular virtual meetups and potential annual family conferences

• Private Facebook community (currently 60+ families) integrated with foundation resources

Research & Awareness

The Problem: NHS is understudied, with limited research funding and many physicians unfamiliar with the condition.

Our Solution:

• Partnerships with researchers and medical institutions studying NHS

• Educational materials for healthcare providers (diagnostic guides, treatment protocols)

• Awareness campaigns to improve early diagnosis and intervention

• Guidance on navigating difficulty with insurance providers

Nance-Horan Syndrome (NHS) is a rare X-linked genetic disorder primarily affecting vision. Key characteristics include:

• Congenital cataracts requiring early intervention

• Dental anomalies including abnormal tooth shape and spacing

• Developmental delays affecting gross and fine motor skills

• Increased risk of glaucoma requiring ongoing monitoring

• Craniofacial differences

NHS predominantly affects males, though female carriers may show mild symptoms. Current medical literature suggests extreme rarity, but our community demonstrates the condition is significantly underreported due to lack of genetic testing access, misdiagnosis, and limited physician awareness.