Rare
News
Northwest Ohio HR Association selects The Avalon Foundation as Thier Nonprofit for 2019
Our President, Deb Ayres, was invited to speak this morning to over 100 HR professionals introducing them to TAF. While our organization typically is represented by our kc4k kids; the meeting started at 8am on a school day so Deb filled in. “I never feel like I can...
kc4k Sisters Start House for Hope!
To learn more, visit KidsBuildingForKids.org
The Avalon Foundation's GuideStar page is Awarded the Bronze Seal
Link to GuideStar page
Hanson Inc. donates video project telling TAF's story
Erin & AvalonAmber & DebErin & AvalonThe amazing Hanson TeamPaul Molnar @ Wescott StudiosCarl & JenAvalon, Addison, & Maya After hearing Avalon's story, Hanson Inc. team reached out and offered to donate a full project to help us tell our story....
DYNAMIC DIES IS MAKING A DIFFERENCE . . . . ONE BOX AT A TIME
Jill Kopanis with our kc4k As a parent, what would you do? You discover your child has are rare disorder called HPP (Hypophosphatasia). In order to gain normal abilities like walking, running and jumping, your child must submit to daily injections that are painful. So...
Vineyard Vines chooses The Avalon Foundation!
Last spring Avalon met the staff at a Vineyard Vines store in the Florida Keys. After a few brief exchanges, the store manager asked for her contact information and gifter her with several items to share with the kc4k Board. A few months later, our foundation was...
Rare News
- NORD Applauds Advancement of Critical Legislation Encouraging Rare Disease Drug Development and Improving Access to Care; Urges Continued Bipartisanship to Help People Living with Rare Diseases
- NORD Launches First Canadian Patient Registries on Its IAMRARE Platform
- Molecular pathology of Schaaf-Yang syndrome: Insights into MAGEL2 gene mutations and truncated proteins
- 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
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