Rare & Undiagnosed Network

February 26, 2019 12:00 pm 1 Comment 22

RUN is excited to continue on this journey with our rare and undiagnosed families with the generous support of our community in 2019!

RUN Awareness Campaigns

Rare Disease Day on February 28, 2019

Undiagnosed Rare Disease Day on April 29, 2019

RUN Programs

RUN’s NBA Initiative #RUNNBA

2019 Utah Jazz National Anthem Buddies Announcement coming soon!

When my husband, Justin Zanik, joined the NBA Utah Jazz in 2013, I had a dream to have rare and undiagnosed children honored during a NBA game. During the 2014/2015 NBA season, we approached the Utah Jazz family to see if this was even a possibility. Due to the generosity of the Larry H. and Gail Miller Family Foundation and the Utah Jazz, we were able to start the NBA Initiative for RUN. In 2015, the Utah Jazz was the first team to honor rare and undiagnosed diseases on their home court for the National Anthem. We also honored children that had passed away from a rare or undiagnosed disease by holding up their photograph. It was a dream come true for our family. We continue every year to have our rare and undiagnosed families on the court. We hope to build this program across the entire NBA.

RUN to Universities Program

#RUN2U Program: University of Utah School of Medicine’s Pediatric Medicine Interest Group

In 2017, RUN partnered with the University of Utah School of Medicine’s Pediatric Medicine Interest Group for an hour of experiencing what it is like to live with a rare or undiagnosed rare disease. Our speakers inspired the young future doctors to explore the world of genetics and were introduced to what it is like to live in a diagnostic odyssey and the constant unknown.

#RUN2U: RARE TAMU at Texas A&M University

“At this week’s RARE TAMU meeting we had the pleasure of hosting Gina Szajnuk, Co-Founder and Executive Director of the Rare & Undiagnosed Network RUN, and her oldest daughter, Ava, who shared their experiences living with an undiagnosed rare disease. Their journey as a family navigating through their “diagnostic odyssey” was both inspiring and eye opening. For myself, and I’m sure other future physicians, we don’t often think about what we won’t know how to diagnose after medical school. However, these are some of the most important cases that we will encounter, as the bedside manner we use and the trust that we put in our patients will be major factors in determining our character as physicians. It is hard to deal with these cases, but it is even harder being a family desperate for answers and to feel dismissed by those who are supposed to help you. I know that as I move forward in my journey to becoming a physician that I will keep in mind the Szajnuk’s story and will do my best to provide the best care possible to other families living these battles. Thank you again Gina and Ava for taking the time to share your story with us! Texas A&M University NORD Student Leaders” – Samantha Sliva

NEW Program for 2019!

RUN to Activities Program

In 2019, RUN is starting a program to bring fun activities to families with at least one member suffering from a rare or undiagnosed disease. We are hoping to partner with professionals willing to donate their time and their skills to teach new activities to children and their parents. For families living in the world of the unknown, the financial stress is huge. It is often hard for families to pay for activities for their children. We hope to bring music, sports, arts and many more activities into the lives of rare and undiagnosed families.

RUN to Education Program

2019 Partnership Announcements coming soon!

We are thrilled to announce our RUN Education Series coming in 2019! We are excited to expand our programming and to continue to meet the needs of our rare and undiagnosed disease community. We have already partnered with incredible companies and groups to bring you more educational events focused on the topics that you are interested in throughout the year. These events are designed to inspire, motivate, and spark collaboration among the rare disease stakeholders including patients, healthcare providers, researchers, companies, institutions, and legislators in our state.

RUN to Activities Program

More to come about this program soon! We will be starting the program in May, 2019!

If you would like to get involved as a host, a sponsor or a volunteer, please reach out!

ABOUT RUN

RUN stands for the Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.