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The Avalon Foundation has been passionately working
The Avalon Foundation has been passionately working towards its mission of promoting and teaching youth leadership while offering steadfast support to children undergoing life-altering treatments for rare diseases. Here are some of the recent...
RARE EVENING at SOUK: A Culinary and Bourbon Experience to Remember
Date: October 8, 2023 Time: 5:00 PM - 9:00 PM Location: SOUK Kitchen & Bar, 139 South Huron Street, Toledo, Ohio 43604 About the Event: Embark on a unique journey where the art of gourmet cuisine meets the soul of fine bourbons, all set in the heart of Toledo's...
LADIES NIGHT – Gal-Pal FUN for a great cause!
The Avalon Foundation will be hosting Ladies’ Night FUN-raiser on November 3rd at Sylvania Country Club. The evening’s funds will support “Kids Caring for Kids”; a local youth leadership program that offers support to pediatric patients fighting rare disease.
TAF Board Member, Susan Hagemeyer, on why WORDS MATTER in Toledo Parent!
Our very own Susan Hagemeyer, #TAF board member, was featured in Toledo Parent! “Words Matter” discusses how the words we use matter when discussing disabilities and rare diseases. Here is an excerpt: “Susan Hagemeyer, an active board member of the Avalon Foundation...
Tips for Squeezing in Self Care
Take care of your mental and physical health without leaving home or spending a small fortune! Taking time for yourself is generally a low priority in our American culture. We are taught to work harder, faster, and longer in order to excel and attain the coveted...
#PainBoxWarrior Cora
By Lilliana Stiverson (age 13) Cora Ingariola, who is 5 years old and has HPP, is a strong little girl who keeps pushing through. Cora was diagnosed with HPP when her mom, Molly, noticed that Cora’s teeth were loose already at the age of 2. Molly decided to have...
Rare News
- Congress: Reauthorize the Rare Pediatric Disease Priority Review Voucher Program
- Guest Blog: One Mother’s Mission Turns Into a Global Movement for a Cure for MSD
- Innovative genetic approaches to rare disease diagnosis
- Research may pave the way for systemic targeted therapy for patients with pseudomyxoma peritonei
- Scurvy on the rise in the United States: Pediatric cases triple in five years
- First-ever successful use of modified double-decker technique for scimitar syndrome in a child
- New cortical surface template provides greater accuracy in analyzing neuroimaging data
- Discovering the cerebellum's new role in thirst modulation
- deCODE genetics study highlights potential drug targets for autoimmune thyroid disease
- Why Should I Get Genetic Testing If I Already Have a Diagnosis?
- Why Should I Get Genetic Testing If I Already Have a Diagnosis?
- UCLA research highlights delayed Huntington's disease diagnosis for Black patients
- High ambient temperatures during pregnancy can have detrimental impact on offspring health
- Decoding the significance of subnormal liver enzyme activity
- 2024 NORD Living Rare Forum and Rare Impact Awards Highlights
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