Utah

• Email our Utah Genetic Navigator at utahgenetic@gmail.com

• Find a Genetics Clinic in Utah

Family & Parent Support

Support & Training for raising a child with special health care needs

• Utah Parent Center, Utah Family Voices, Family-to-Family Health Information Center

Newborn Screening Support

Information about Newborn Screening

• Utah Department of Health Newborn Screening Program

Early Childhood Support

Help for infants and toddlers who have developmental delays and disabilities

• Baby Watch

Health Care Support

Help to get a diagnosis, and to get insurance coverage for a diagnosis

• Integrated Services Program (ISP)

Care coordination, education, intervention, and transition assistance

• Children with Special Health Care Needs (CSHCN)

Information on specific conditions/diagnoses, caring for individuals with special health care needs, and finding local providers of clinical and social services

• Utah Medical Home Portal

Medicaid Support

Questions about Medicaid?

• Utah Medicaid

Waiver Support

Resource list of Waivers available in Utah

• Home and Community Based Services (HCBS) Waiver Programs

Education Support

One-on-one Parent Consultant support for navigating Individual Education Plans (IEPs), Transition to Adulthood, and More

• Parent & Training Information (PTI) Project

• Where is Bear is a fun book to enjoy with your child while checking that they meet the milestones of a typical two-year-old.
• Download a PDF of “Where’s Bear”
• View and order developmental books for all ages from the CDC.
• Visit Utah’s “Learn the Signs. Act Early.” website for more information.

• View the Algorithm (for Healthcare Professionals)
• View the Algorithm in Spanish (for Healthcare Professionals)
• Learn more about the Algorithm
• This algorithm provides guidance for primary care clinicians in determining the cause of developmental delay, including the initial genetic evaluation.

• View the Algorithm (for Healthcare Professionals)
• Learn more about the Algorithm
  • This algorithm serves as a practical guide to assist primary care providers in diagnosing Hypermobile Ehlers-Danlos syndrome with step-by-step recommendations for diagnosis, management, and referral.
• MSRGN Time 4 Genetics (January 6th, 2022) Webinar w/ Abdallah (Abe) Elias – What To Do When you Suspect Ehlers-Danlos Syndrome
  • Enduring continuing education credits (CEUs) available for physicians, nurses, pharmacists, and physician assistants

• Marzia (Co-Lead)
• Janel (Co-Lead)
• Heidi 
• Nicola
• Mike
• Tristin
• Tiffany (Utah Genetic Navigator, email here)