Rare
News
Getting to Know Avalon Budd, Founder of The Avalon Foundation
Avalon Budd’s personal struggle with HPP treatments provided impetus to found The Avalon Foundation of Toledo. Avalon (Avie) Budd has a rare genetic disease, Hypophosphatasia (HPP), that is characterized by the abnormal development of bones and teeth. Avie, who...
Deb Speaks with Fred LeFebvre & The Morning News
PBE's "Casual for a Cause"
Dressing down in the office benefits charity
13abc News Story on House for Hope
Brian Gruber, owner of Ridge Stone Builders, is interviewed by Lissa Guyton, 13abc, about House for HopeKaty Gruber interviewed by Lissa Guyton, 13abc NewsKelsey Gruber is interviewed by Lissa GuytonSome of The Avalon Foundation's kc4k Team inside the House for Hope...
The Toledo Walleye Highlight TAF
The Avalon Foundation was featured as the non-profit of the night at the Toledo Walleye hockey game!
BGSU EMOD Students Choose TAF for Capstone Project
Some of The Avalon Foundation’s Board members met with the Executive Masters of Organization Development students at BGSU this past weekend for a meet & greet and initial discovery. Five students plus a field mentor spent Saturday afternoon exploring the story of...
Rare News
- Researchers map early genetic development of the brain
- National Organization for Rare Disorders (NORD) Names Pamela K. Gavin as CEO; Peter L. Saltonstall Retires and Will Serve in Consultative Role
- The Surreal Reality of Being Undiagnosed: Lori’s Story in Honor of Undiagnosed Day
- April Showers Bring May Flowers: Christine’s National Volunteer Month Story
- Study reveals how genetic changes in SCN2A gene impact autism and epilepsy
- Machine learning system offers new hope for diagnosis of rare genetic disorders
- 1 in 10 Californians with Rare Disease are One Step Closer to Having their Voices Heard in State Government; NORD Advocates Testify and Help the Rare Disease Advisory Council Bill Advance to Appropriations
- 1 in 10 Californians with Rare Disease are One Step Closer to Having their Voices Heard in State Government; NORD Advocates Testify and Help the Rare Disease Advisory Council Bill Advance to Appropriations
- Genetic Counselor to Camp Counselor: Kate’s Story in Honor of National Volunteer Month
- NORD Announces 2024 Rare Impact Award Honorees, Emmy Award-Winning Journalist, Peter Alexander to Host
- From Runner to Running for Rare Coach: Bill’s Story in Honor of National Volunteer Month
- Mississippi Enacts Critical Reform to Improve Access to Care for the 1 in 10 State Residents Living with a Rare Disease
- Becoming a Catalyst for Change: Sarah’s Story in Honor of National Volunteer Month
- How Volunteering with NORD Changed My Life: Shannon’s Story for National Volunteer Month
- NORD and Vermont Advocates Convene in Montpelier Calling for Step Therapy Reform
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