Rare
News
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...
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,...
Rare News
- New algorithm could improve the search for genetic cause of hereditary diseases
- Study aims to optimize radiotherapy treatment for patients with anal cancer
- Pioneering AI-based approach identifies rare disease patients using electronic health records
- Targeting uncontrolled inflammation may make tumors more responsive to treatment
- One-third of patients with chronic thromboembolic pulmonary hypertension also have left heart disease
- New treatment pathway identified for patients with idiopathic nephrotic syndrome
- The drug company that prospered without creating any drugs
- Optimized genome-editing method opens the door to more effective treatment of genetic diseases
- The emergence of tanapox in South Africa, 2022
- Using brain organoids to test gene therapies for a rare disease in children
- New treatment for fibrous dysplasia shows promising results in NIH clinical trial
- Novel immunotherapy-based approach for low-grade lymphomatoid granulomatosis improves patient survival
- Study focuses on a novel mechanism of the body's regulation of salt balance
- Upgraded tumor model points the way toward more effective cancer therapies
- Computational analysis of large genetic datasets reveals rare disease etiologies
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