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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
- 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
- The Needs of Rare Disease Patients Cannot Be Forgotten in this Week’s Congressional Hearing on Lab Developed Diagnostic Tests (LDTs)
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