NDIAG • Education • Advocacy • Support
Meet the Founder & About NDIAG
NDIAG is a rare-disease advocacy organization centered on NDI/AVPR education, family empowerment, awareness, and systemic advocacy.
Meet the Founder
Kathryn Weaver
Kathryn Weaver is the Founder & CEO of the Nephrogenic Diabetes Insipidus Advocacy Group (NDIAG), a rare-disease advocacy organization focused on education, awareness, family support, and systemic advocacy for people affected by NDI/AVPR.
Kathryn is a mother of two medically complex children, a military wife of more than a decade, and a special education teacher assistant/paraprofessional. Her advocacy has grown from lived experience into broader work supporting medical families, schools, communities, and rare-disease awareness.
At the heart of her work is her daughter, Lila, who has AVPR2-related Nephrogenic Diabetes Insipidus (NDI) and a severely presenting case associated with unbalanced Lyonization of the X chromosome. For 4.5 years, Lila's family fought for answers while she experienced the effects of undiagnosed and unmanaged NDI. By the time she was diagnosed, she was already living with permanent effects.
Kathryn decided that Lila's story could not simply be something her family survived. It had to become a reason to make things better for the people who come after her. NDIAG was built from that purpose: to make NDI more visible to doctors, hospitals, schools, emergency responders, families, and the general public; to help people recognize the disease sooner; and to make sure no child or little girl like Lila has to spend years without answers when earlier awareness could change their future.
Her advocacy has included EFMP military-family support, Capitol Hill advocacy, school inclusion, service-dog advocacy, community education, media appearances including CBS coverage, and building support communities for medical families. She is working to make waves with Lila's story—not to center one family, but to use what her family learned to change the future of NDI. She is proudly #LoudForLila: for Lila, and for every person who comes after her.
She was recognized as the 2024 Armed Forces Insurance Military Spouse of the Year for Fort Meade for military-family advocacy and support and has also received a Rotary Leadership Award.
NDIAG is bigger than one family.
NDIAG exists to empower individuals and families to understand their condition, ask questions, advocate with confidence, find community, and push for systems that better recognize rare disease.
Kathryn also founded Medical Complex Mamas, a community of more than 6,000 people, to connect medical moms and caregivers with understanding, support, and advocacy.
NDIAG has created community inclusion campaigns, school awareness work, family meetups, and the first National NDI Awareness Day in 2026, with support through proclamations from communities across the United States.
Empowering advocates
NDIAG believes families should not need a medical degree to be heard. We provide education and resources that help families communicate with medical teams, schools, emergency responders, and communities.
Volunteer with NDIAG
We welcome people interested in helping NDIAG grow. Volunteer opportunities may include:
Community
Community leadership and family support.
Research
Resource review, research, and education support.
Programs
Programs, impact tracking, and family initiatives.
Fundraising
Fundraising, grants, and campaign support.
Engagement
Social engagement and awareness campaigns.
Website
Website/content and digital support.
Bookkeeping
Financial organization and bookkeeping support.
Advocacy
Policy, outreach, and family advocacy support.