Utah Rare Disease Advisory Council

03/30/2026

Meet the RDAC: Jennifer Strohecker, Council Member, CEO Strohecker Health Solutions

Jennifer Strohecker, PharmD, is the founder and CEO of Strohecker Health Solutions (SHS), where she leverages more than 25 years of experience across state, managed care, and healthcare delivery systems. SHS partners with healthcare organizations, state programs, and providers to translate complexity into strategy and ex*****on – strengthening compliance, advancing performance, and achieving measurable, person-centered gains in access, quality, and cost.

Before founding SHS, Dr. Strohecker served as Utah’s State Medicaid Director and Director of Integrated Healthcare for the Department of Health and Human Services. She led major transformation initiatives, including Medicaid’s system modernization, the post-pandemic unwinding process, managed care reform, and policy expansions addressing maternal health, dental care, and social determinants of health.

Earlier in her career, Dr. Strohecker was Senior Pharmacy Director at Molina Healthcare and assistant professor of pharmacy practice, and a clinical pharmacist at Intermountain Health -foundational experiences that continue to ground her people-first operationally focused approached to policy and program design.

Driven by a commitment to operational excellence and measurable impact, Dr. Strohecker balances her leadership with SHS with a deep investment in the healthcare community. In addition to leading SHS, she serves on several nonprofit boards, teaches at the University of Utah College of Pharmacy, and volunteers locally and with the Camotán Clinic in Guatemala.

03/24/2026

Meet the RDAC: Aaron Quinlan
Council Member, Chair of Human Genetics, University of Utah

Aaron is an Endowed Professor and Chair of Human Genetics with a history of innovation in computational genomics. His laboratory develops and applies software and new algorithms to study the origins, patterns, and consequences of mutations in diverse contexts including rare diseases, infertility, and cancer. Their tools are used daily by thousands of researchers worldwide. They innovate by devising genomic, algorithmic, and data science techniques to advance precision medicine. They have created over 50 widely-used, open-source software tools that advance genomic discovery worldwide.

03/19/2026

On March 3rd we celebrated An Evening of Hope with members of Utah’s rare community. Patients, families, scientists, doctors and advocates from many backgrounds came together to inspire and support one another.

03/19/2026

Meet the RDAC: Julianne Gray
Council Member, Rare Disease Patient Advocate, C3G Warriors

Julianne Hall Gray is an advocate and community leader living with C3 Glomerulopathy (C3G), an ultra-rare kidney disease. Having navigated the isolation of a rare diagnosis firsthand, Julianne operates with the deeply held belief that a disease isn’t rare if it affects you. She has dedicated herself to ensuring that other Utah families don’t have to walk that daunting path alone. She is an active member of the online patient support group C3G Warriors and kidney disease advocacy organization NephCure. She brings over 20 years of experience in strategic communication and marketing. She currently works in product marketing for a Utah-based software company. She holds an MBA from Brigham Young University and a BA in Communication from Southern Utah University.

As a member of the RDAC, Julianne will strive to ensure that patient voices and lived experiences are truly understood by those shaping healthcare policy. She is a vocal advocate for increasing education to enable earlier diagnosis, securing research funding, and expanding access to life-changing medications.

03/16/2026

The Utah RDAC is charged with representing the needs of Utah's rare disease patients to the state legislature. During the 2026 Legislative Session, the RDAC addressed several bills that would impact Utah's Rare Community. Here, RDAC member, Ava Szajnuk, speaks in support of SB319.

More information on this bill can be found here: https://le.utah.gov/~2026/bills/static/SB0319.html

03/15/2026

The Mast Cell Disease Society is a non-profit organization dedicated to providing multi-faceted support to patients, families and medical professionals in our community and to leading the advancement of knowledge and research in mast cell diseases through education, advocacy and collaboration.

03/13/2026

After suffering from swelling skin, itches, and red rashes for over 10 years, one Salt Lake City woman's journey to find answers was found to actually be a rare disease.

03/12/2026

Meet the RDAC: Lorenzo Botto, Council Member, Physician, Medical Geneticist, University of Utah

Lorenzo is a clinician and epidemiologist, trained in medical genetics and public health. His clinical work focuses on the diagnosis and care of families with rare and undiagnosed conditions. Rare and undiagnosed individuals and families are many but are largely unseen and unheard. This community is stronger if it joins forces with providers and other stakeholders and speaks with one voice to policy makers.

03/11/2026

03/10/2026

Doctors in Utah are now testing newborns for Hunter Syndrome, a rare genetic disorder.

03/10/2026

Meet the RDAC: Marian Furst, Council Member, Retired Patent and Trademark Attorney

Marian is a retired patent attorney, a second career she adopted after working in the oil and gas industry. She earned a bachelor’s degree in chemistry, a master’s degree in inorganic chemistry, a PhD in Geochemistry, and a law degree. She is also a patient with three diagnosed rare diseases, the most significant of which is a genetic immune deficiency. As a volunteer for the Immune Deficiency Foundation, she became aware of many issues faced by the primary immune deficiency community and the broader rare disease community. Through the Immune Deficiency Foundation, she discovered a passion for advocacy about these issues.

She has a desire to use her advocacy skills and experience to help the rare and undiagnosed community.