NKH Awareness Day!

Author: Barb Calhoun

Nkh Awareness 2021

NKH Families Raising Awareness through various activities 

Beginning April 26th, Everyone is welcome to learn, share and support NKH patients and their families.

Enter one of the raffles for wonderful prizes; read about patients and the strength and resilience of families; support them by joining in a Virtual NKH Walk-A-Thon MAY 2, 11:00AM 

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Request for Nominations: Patient Advocacy and Rare Disease Research Awards

Author: Barb Calhoun

All current undergraduate students in their senior year may be nominated. 

The Megan K. Crowley Award

 This award recognizes outstanding contributions in the areas of Rare Disease Patient Advocacy at the Boler-Parseghian Center. Such contributions may include, but are not limited to: 1) Raising awareness of Rare Diseases at the University of Notre Dame with regional, national and international organizations 2) Developing products/tools/technologies that help rare disease patients and their families with communications and disease management.  Awardees will receive a $1000 cash award and a plaque.…

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Follow up on Rare and Neglected Disease Day 2018

Author: Barb Calhoun

This year’s Rare Disease Day Conference started strong on Friday, February 9th, with exceptional research talks along with patient perspectives on the importance of research for Rare Diseases. NonKetotic Hyperglycinemia, Rare Cancers, Cystic Fibrosis and Niemann Pick Type C were some of the research topics presented. Sadly, Saturday was cancelled due to a snow blockade, but we present great highlights from Friday below.…

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