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Youth Mental Health
By Alayna Sarver (age 15) Mental health—for you and your family—is a prevalent factor in your overall well-being. Although your physical health is more noticeably assessed, mental health is equally as important! Your mental health is simply how your brain is working...
Avalon Budd Nominated for Global Genes Award!
Avalon Budd, the young founder of The Avalon Foundation of Toledo, has been nominated for a RARE Champion of Hope Award from Global Genes! Describe why your nominee is a Champion of Hope in the selected field. Avalon (Avie) Budd, who will turn 15 next month,...
Avalon Foundation Nominated for RARE Champion of Hope Award
The Avalon Foundation of Toledo has been nominated for a RARE Champion of Hope Award through Global Genes! Describe why this organization is Champion of Hope in the selected field. The Avalon Foundation began as the dream of a 10-year-old girl who was inspired to...
Head of the Herd: Deb Ayres, President, The Avalon Foundation
At the Head of the Herd is… Deb Ayres, President, The Avalon Foundation. Deb advocates for… patients with pediatric hypophosphatasia (HPP) and their families. Deb is located in… Toledo, Ohio. How Deb got here… When my daughter...
When Schools Go Above and Beyond
For medically fragile and immunocompromised students, physically attending school has its challenges, and few districts offer a combination of traditional versus virtual learning. Ottawa Hills High School, who piloted a trial iPad program with Avalon Budd last year, is one of the few exceptions.
Avalon Foundation in Toledo Area Parent!
Thank you to Toledo Area Parent News and writer Joy Hajjar for featuring us in the April edition of Toledo Parent! Jen and Deb were honored to be included and thoroughly enjoyed talking with Joy; it was an overall wonderful experience. Thank you, Toledo Area Parent,...
Rare News
- 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
- CNIC researchers unravel complexities of Andersen-Tawil syndrome
- Baylor study reveals role of newly inherited DNA variants in recessive diseases
- The Impact of Volunteering: Eric’s Story in Honor of National Volunteer Month
- C-Path announces formation of new task force to foster drug development for Progressive Supranuclear Palsy
- Children with multiple sclerosis have better outcomes if treated early and with high-efficacy therapies
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