Recent Posts
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Ciara Webster shares her journey
Ciara Webster: Hi, my name is Ciara. In April of 2006, at the age of 16, I was diagnosed with a rare autoimmune disease known as Eosinophilic Fasciitis. At...
Katie Nuffer: Shares about conquering her pain and starting her senior year of high school!
Katie Nuffer: Hey everyone, The beginning of school is stressful and exciting at the same time. It’s something that I, personally, have been looking forward to for quite some...
Annette Maughan: The Path to KBG
Annette Maughan: After 7 years, our little miracle, Bug, made two….three. Small, perfect, happy and very hungry. This little boy led us into a world we never realized...
Register for Aware of Angels Art For Angels-Art Contest & Silent Auction
ARTISTS: your ART is needed! Donate your ART for a cause & promote your work. Purchase original Artwork! Aware of Angels is excited to host our 1st Annual...
Register now for Global Genes annual RARE Patient Advocacy Summit
Every year Global Genes hosts it’s annual RARE Patient Advocacy Summit. The goal of the Summit is to have patient advocates and other rare disease stakeholders, “Connect. Educate....
Rare and Undiagnosed Network (RUN) Day Without Doctors Hosted by the National Ability Center in Park City!
Dear Families, The National Ability Center has been generous to offer an afternoon of fun for our rare and undiagnosed families here in Utah. The activities will be...
Courageous Kid’s Invitational by Lionheart and BYU Men’s and Women’s Track Teams
Courageous Kid’s Invitational by Lionheart and BYU Men’s and Women’s Track Teams is a track and field night for children and their siblings with chronic medical conditions. Events...
Angela Metzger shares why she nominated RUN for a grant
“Why are you recommending this organization?” Angela Metzger: I have been involved in volunteer opportunities. Our family makes it a bi-yearly priority to do a large donation of...
Ava Szajnuk: Going back to school for a rare child is different than a healthy child
Gina Szajnuk: Getting ready to go back to school for a rare child is a little different than a healthy child. When most families are just shopping at Target...
Lucy Szajnuk Update: No solid answers for infection and fever
Gina Szajnuk: Lucy’s blood and urine cultures came back negative today. We will not have a solid diagnoses for her 31,000 white blood cell count or her fever...