Join us for advocacy, education, and community gatherings across Nebraska
Our advocacy activities, education initiatives, and policy victories
January 27, 2026 - Governor Pillen Reverses Course on AD Waiver Cuts
Following our press conference and extensive family advocacy, Governor Pillen directed DHHS to make critical changes to the Aged and Disabled (AD) Waiver proposal!
Major Victories:
"I am truly appreciative of the Nebraskans who reached out to my office and participated in the public feedback process."
- Governor Jim Pillen
This is what advocacy looks like - families' voices were heard!
Read Full Announcement → View DHHS Information →Thank you to everyone who joined us at the State Capitol!
Nebraska RARE and disability advocacy partners gathered at the Capitol Rotunda to address proposed Medicaid waiver changes impacting vulnerable adults with disabilities and rare diseases across Nebraska. Families shared powerful personal stories and distributed action sheets to senators, bringing critical attention to how these changes affect our community.
KETV NewsWatch 7 covered our press conference!
Watch the full story to learn how proposed Medicaid waiver cuts were impacting elderly and disabled Nebraskans, and hear directly from the families who fought for their loved ones.
Watch Full Story on KETV →Video and article courtesy of KETV NewsWatch 7
Continue the Advocacy:
Questions? Reach out via our contact page.
Thank you to all who submitted comments! The second public comment period on the revised AD Waiver proposal has now closed.
What Changed Thanks to Family Advocacy:
Nearly 600 people participated in the first comment period, and families' voices led to major victories. Thank you for continuing to advocate for Nebraska rare disease families!
Questions? Reach out via our contact page or visit the DHHS website.
Stay Connected: More events will be announced soon. Contact us to get involved!
Amplifying events and initiatives from other organizations supporting the rare disease community
As a growing organization, we're not yet able to financially sponsor outside events — but we're glad to help spread the word! Below are events hosted by other organizations serving Nebraska's rare disease and disability community. Know of an event we should feature? Let us know.
The 4th Annual Westbury Open is a charity golf scramble raising funds for Rett Syndrome research. After selling out three years in a row, this year's tournament includes range practice, 18 holes with cart, and a post-round banquet. Rett Syndrome is a rare genetic neurological disorder affecting roughly 1 in 10,000 females.
The Team Hope Walk brings together families, caregivers, advocates, healthcare professionals, and community supporters to raise awareness and support for individuals and families affected by Huntington's Disease — a progressive, inherited neurological disorder with no cure. Funds raised support local support groups, educational programs, advocacy efforts, and research toward better treatments.
Hunter's Hope Heroes works to reduce the burden on local families affected by Duchenne Muscular Dystrophy and DEGS 1 Leukodystrophy by expanding access to resources, funding research toward effective treatments, and building community understanding of these rare diseases. This golf outing includes 18 holes, cart, snacks, supper, and prizes.
More community events will be added here as they're shared with us.