Utah Rare Disease Advisory Council

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Utah Rare Disease Advisory Council Overcoming barriers preventing individuals living with rare diseases from obtaining proper treatment, resources and care for their condition(s). utahrdac.org

On September 12, the Utah Rare Disease Advisory Council (RDAC) was grateful to join the Utah Program for Inherited Neuro...
10/01/2026

On September 12, the Utah Rare Disease Advisory Council (RDAC) was grateful to join the Utah Program for Inherited Neuromuscular Disorders (UPIN) for Family Day at Loveland Living Planet Aquarium!

(left to right: Dr. Ron Day, Marian Furst, Januel Gomez Colon, Matthew Pearl, Ava Szajnuk)

UPIN Family Day brought families together for community updates, clinical research overviews, family discussions, lunch, and kid-friendly fun. The RDAC was honored to participate in the resource fair, connect with families, and share information about our work supporting Utah’s rare disease community.

We’re grateful to UPIN for bringing families and community partners together for a meaningful day of connection and support!

Our meetings are open to the public. If you are interested in learning more or getting involved, send us a message! Yo...
08/28/2026

Our meetings are open to the public. If you are interested in learning more or getting involved, send us a message! You can attend in-person or virtually.

We gave our youngest son the name of Andrew because it means “strong and manly.” When I was pregnant with him, a routine...
08/27/2026

We gave our youngest son the name of Andrew because it means “strong and manly.” When I was pregnant with him, a routine ultrasound showed that he would be born with clubbed feet. We knew then that he would need all of the strength he could get.

Shortly after he was born, we took him to Shriners to correct his feet. We were reassured there that often times clubbed feet are not an indicator of other congenital conditions and that once they were corrected, Andrew would be just fine. Unfortunately for his case, that did not end up being true.

Read the rest of Rare Voices: Sarah & Andrew Jeffs in our quarterly newsletter, Rare Matters: https://lnkd.in/gWJw5zAN

Awareness, Understanding, and Overcoming.Our goal is to address barriers preventing individuals living with rare disease...
08/26/2026

Awareness, Understanding, and Overcoming.

Our goal is to address barriers preventing individuals living with rare diseases from obtaining proper treatment, resources and care for their condition(s).

Learn more about the Utah RDAC, the community we serve and current initiatives in our quarterly newsletter, Rare Matters: https://utahrdac.org/news/

With a brand new PhD in geochemistry, I joined an oilfield service company, spending four years on special projects in t...
08/24/2026

With a brand new PhD in geochemistry, I joined an oilfield service company, spending four years on special projects in the company research lab in Connecticut and two years as a geochemist advisor to the operations part of the company in Houston and Dallas. When oilfield drilling activity in the US plummeted, I was laid off, and I found a new position at a small oilfield service company in Boulder, Colorado.

Read more the rest of our RDAC Member Feature in our Quarterly Newsletter, Rare Matters: https://utahrdac.org/key-stakeholder-marian-furst/

Our quarterly newsletter is now available! Check it out at utahrdac.org/news
08/20/2026

Our quarterly newsletter is now available! Check it out at utahrdac.org/news

One of our favorite moments at Canyon Rim Cares was seeing our friend Laura Hadley from the Cystic Fibrosis Foundation! ...
07/31/2026

One of our favorite moments at Canyon Rim Cares was seeing our friend Laura Hadley from the Cystic Fibrosis Foundation!

Their service project was a beautiful reminder of the power of community. Volunteers assembled activity kits for children to use during long medical appointments, helping pass the time while reminding families that so many people are cheering them on.

Thank you to Laura and the Cystic Fibrosis Foundation for the incredible work you do to support children and families. We are grateful to partner with organizations that share our commitment to creating a more connected, compassionate, and supportive community for families living with rare diseases and complex medical conditions.

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230 East South Templte, Ste 100
Salt Lake City, UT
84111

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