Undiagnosed Rare Disease

04/29/2026

Today is Undiagnosed Day! It is a day to celebrate those living with an undiagnosed rare disease and their families as well as to remember the ones we have lost. The Undiagnosed Day campaign seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone with a genuine interest in undiagnosed rare diseases and the world of genomics.

Undiagnosed rare disease patients should be recognized as a distinctive population that faces unique circumstances as they seek an accurate diagnosis. Since 80% of undiagnosed diseases have identified genetic origins, it is imperative to raise awareness about the importance of genomics for undiagnosed rare disease patients.

We would like to thank everyone dedicated to working rigorously within the undiagnosed rare disease community to find a patient's diagnosis.

Learn More: https://rareundiagnosed.org/april-29th-is-undiagnosed-rare-disease-day-2026/

Thank you all for your continued support, love and prayers.

Much Love,
Gina, Justin, Ava, Oskar, & Lucy

03/26/2026

Thank you to the Utah Jazz and Governor Cox for honoring Rare Disease Day and the work of the Rare & Undiagnosed Network RUN and the Utah Rare Disease Advisory Council! It was a very special evening for all of us. It was wonderful to see our rare families. There were a lot of hugs and happy tears. Thank you all for your continued support of our family, RUN, the RDAC and the entire rare and undiagnosed community!
Much Love, The Zaniks
Link: https://rareundiagnosed.org/utah-jazz-governor-cox.../
Link to video: https://youtu.be/tj1YyWamCIk?feature=shared

03/26/2026

Thank you to the Utah Jazz and Governor Cox for honoring Rare Disease Day and the work of the Rare & Undiagnosed Network RUN and the Utah Rare Disease Advisory Council! It was a very special evening for all of us. It was wonderful to see our rare families. There were a lot of hugs and happy tears. Thank you all for your continued support of our family, RUN, the RDAC and the entire rare and undiagnosed community!
Much Love, The Zaniks
Link: https://rareundiagnosed.org/utah-jazz-governor-cox.../
Link to video: https://youtu.be/tj1YyWamCIk?feature=shared

03/26/2026

Thank you to Recursion Pharmaceuticals for hosting the “Evening of HOPE” for Utah Rare Disease Day 2026. It was our fourth annual event, hosted by Recursion in partnership with the Rare & Undiagnosed Network RUN. The special evening took place on March 3rd, 2026. We welcomed speakers from across the rare disease community – physicians, patients, and advocates – to share their stories of hope. A very special thank you to all of our speakers and everyone involved. It's an evening we will cherish forever.

Here is RUN's link for the full video of the event and over 50 wonderful photographs. Link: https://rareundiagnosed.org/evening-of-hope-recursion.../

Thank you all for your continued support of our family, RUN, the Utah Rare Disease Advisory Council (RDAC) and the entire rare and undiagnosed community.
Much Love,
The Zaniks

Highlights from Recursion's Evening of Hope
Link: https://youtube.com/shorts/nGOqc0rPVJ4?si=LHNd4TQFnSPukNQH

03/24/2026

NBA Utah Jazz's Pregame KJZZ video for 2026 Rare Disease Day with Governor Cox, Rare & Undiagnosed Network (RUN), the Utah Rare Disease Advisory Council (RDAC) and the Zanik family.

Thank you to the Utah Jazz and Governor Cox for honoring Rare Disease Day and the work of the Rare & Undiagnosed Network RUN and the Utah Rare Disease Advisory Council on February 28th! It was a very special evening for all of us. It was wonderful to see our rare families. There were a lot of hugs and happy tears. Thank you all for your continued support of our family, RUN, the RDAC and the entire rare and undiagnosed community!

Much Love,
The Zaniks

Link for photos:
https://rareundiagnosed.org/utah-jazz-governor-cox.../

Link to Jumbotron RDD video:
https://youtu.be/tj1YyWamCIk?feature=shared

Link to Utah Jazz Pregame KJZZ video: https://youtu.be/S4ND9CndhSg

NBA Utah Jazz's Pregame KJZZ video for 2026 Rare Disease Day with Governor Cox, Rare & Undiagnosed Network (RUN), the Utah Rare Disease Advisory Council (RDA...

02/27/2026

Thank you to Governor Spencer J. Cox for making Utah Rare Disease Day official again this Saturday, February 28th! It is a day dedicated to raising awareness about rare diseases, the impact on patients and caregivers as well as the need for research and treatments. Together, we stand with the 300 million people worldwide living with rare diseases. When this community comes together, it drives research, shapes policy and strengthens support systems. RARE is powerful.

01/24/2026

Please join us on Tuesday, March 3rd, for our fourth annual “Evening of Hope” Rare Disease Day event, hosted by Recursion Pharmaceuticals in partnership with the Rare & Undiagnosed Network RUN. We look forward to hearing from ARUP Laboratories, BioUtah, Utah Rare Disease Advisory Council (RDAC), University of Utah, Intermountain Primary Children's Hospital and many more engaging speakers!

The event will kick off with refreshments and social time, followed by speakers from our Utah rare disease stakeholders, rare and undiagnosed patients, caregivers and patient advocates sharing their powerful stories.

We hope to see you there!
RSVP: https://luma.com/rare-disease

Details:
Tuesday, March 3rd
5:00p - 8:00p MT (Doors open at 4:30p)
Recursion
41 S 400 W, Salt Lake City, UT 84101

Much Love,
Gina Zanik (Szajnuk) (Co-Founder/Executive Director of RUN & Chair, Utah Rare Disease Advisory Council (RDAC),
Ryan Kelly (Chief Communications Officer at Recursion) & the organizing committee

01/24/2026

UNDIAGNOSED. "They shine brightly despite their complex medical issues that affect them on a cellular level minute to minute, hour by hour, day by day. They still live each day with love, light and laughter. They are calm and strong and really incredible advocates for themselves and their rare and undiagnosed community. Lastly, we had another round of reanalysis this year and there were still no answers. Undiagnosed was our diagnosis and remains our diagnosis." 💙🤍💗

Special thank you to RARE Revolution Magazine for sharing our journey in their Winter 25/26 edition - RARE and Undiagnosed.

Article link: ​https://bit.ly/Undiagnosed-Gina-RUN

Full edition link: https://bit.ly/RAREAndUndiagnosed

Learn more about Rare Revolution Magazine: www.rarerevolutionmagazine.com

Learn more about the Rare and Undiagnosed Network: www.rareundiagnosed.org
💙🤍💗

05/31/2025

Celebrating our Undiagnosed Rare Disease Awareness Ribbon, created by Ava Szajnuk and designed by Erica Braymen in 2016!

Rare & Undiagnosed Network RUN's and Undiagnosed Network (RUN)'s first was on April 29th, 2016! We created the Undiagnosed Awareness ribbon from Ava Szajnuk’s drawing. Ava was eight years old at the time and an undiagnosed rare disease patient. Her brother, Oskar, and her sister, Lucy, are also undiagnosed rare disease patients.

Since zebras represent the rare community, we envisioned having a zebra ribbon like the Rare Disease Awareness ribbon but added baby blue and baby pink colors to it.

Erica Braymen designed the ribbon at Ecosyse. Together, we brought it to life!

It has been celebrated all over the world on !

Learn more about the history of the ribbon and how it has been shared globally: https://lnkd.in/gV6Q6VgF



Much Love,
Gina Zanik

09/13/2024

EVENT: Courageous Kids Invitational BYU is an adaptive track and field event put on by the BYU track team for kids with special needs. We accommodate for all ages and abilities. T-shirts and medals are provided for all Courageous Kids and their participating siblings. Dinner (provided by J Dawgs) will be served to the families. Register by the 18th to guarantee this year's t-shirt and medal. https://courageouskidsinvitational.org/