For a family navigating a rare genetic condition, the journey often feels lonely. There are medical appointments, therapies, school meetings, unfamiliar systems, and questions about what the future will hold. Even when families are surrounded by knowledgeable professionals, there is something uniquely powerful about connecting with someone who has been there, too.
That connection is at the heart of the Utah Parent Center (UPC). For more than 40 years, UPC has helped Utah parents support their children, youth, and young adults with disabilities and special healthcare needs so they can live included, productive lives in their communities. And all of UPC’s support for families is provided at no cost to them.
UPC Parent Consultants are parents and family members of individuals with disabilities themselves. This includes consultants raising children with rare genetic conditions, rare diseases, complex medical needs, and lifelong disabilities. They know firsthand what it can mean to search for answers, coordinate multiple systems, advocate for a child, celebrate progress others may not recognize, and plan for an uncertain future.
UPC provides support in three primary ways: individual consultation, trainings, and publications. Through one-on-one consultation, families can talk directly with a Parent Consultant by phone, email, virtually, or in person. Consultants listen to what a family is experiencing, help them understand their options, connect them with resources, and prepare them to advocate for what their child or family member needs. UPC also provides free workshops and trainings on topics ranging from early intervention and special education to healthcare, Medicaid, disability services, transition to adulthood, employment, self-advocacy, sibling support, and future planning. The UPC has also published several handbooks available digitally at utahparentcenter.org/publications to help families navigate education, healthcare, disability, and transition to adulthood.
“[Our UPC consultant] has been an incredible source of guidance, advocacy, and steady support for our family. She listened with care, helped us understand complex systems, and empowered us to move forward with clarity and confidence. Her compassion, knowledge, and responsiveness made an overwhelming process feel manageable and less isolating. We are deeply grateful for her support and the difference she made for our son and our family.”
For families living with rare conditions, UPC can be especially valuable because support does not depend on finding another person with the exact same diagnosis. A parent may be the only person in their community raising a child with a particular genetic condition, but they are not the only parent who has walked into an IEP meeting nervous about advocating for their child, struggled to understand Medicaid or disability services, coordinated complicated healthcare, worried about siblings, or wondered what adulthood will look like.
“Wow! I’m so glad I found you all. I was lost and overwhelmed. I’m so relieved to have help. My consultant assigned to me even came to my latest IEP meeting.”
That is the power of peer support: “rare” does not have to mean alone. Whether a family has just received a diagnosis, has spent years navigating complex systems, or is preparing for the transition to adulthood, the Utah Parent Center offers a knowledgeable peer who can listen, help them find their next step, and walk alongside them.
And because UPC’s consultation, training, resources, and family support are free, families can reach out when they need help without wondering whether they can afford it.
Sometimes the most important resource a family can find is another person who understands.
Connect with the Utah Parent Center
Connect with a Parent Consultant for individualized support, information, resources, training opportunities, or help identifying your next step.
Utah Parent Center
5296 S. Commerce Dr., Suite 302
Murray, UT 84107
Phone: 801-272-1051
Toll-Free: 1-800-468-1160
Get Connected: utahparentcenter.org/contact-us
Upcoming Training: utahparentcenter.org/events