Nevada

• Email our Nevada Genetic Navigator Mariah at nevadagenetic@gmail.com

• Find a Genetics Clinic in Nevada
• Find a Genetic Counselor

Family & Parent Support

Family Navigation Network (Nevada Center for Excellence in Disabilities)

• Contact this group if/when:
  • you need health care support and community resources for children and youth with special health care needs, their families, and professionals who serve them

• Contact Information:
  • Address: University of Nevada, Reno, Nevada Center for Excellence in Disabilities (NCED):
  • Phone: 833-427-1673
  • Se Habla Español
  • Email: NCEDFamily2Family@unr.edu

Little Miss Hannah

• Contact this group if/when:
  • you would like help enhancing the quality of life for young children diagnosed with rare, life-limiting, or undiagnosed complex medical needs, as well as children who have been placed in hospice or palliative care
• Tools, financial assistance, and support resources available

Nevada Governor’s Council on Developmental Disabilities (NGCDD)

• Contact this group to:
  • Engage in advocacy, system’s change and capacity building activities for people with developmental disabilities and their families in order to promote equal opportunity, self-determination, and community inclusion.

Nevada Rare Disease Advisory Council – Nevada Department of Health

• Contact this group to:
  • Review what the Nevada Department of Health is discussing and researching regarding rare diseases in Nevada

Finding Insurance in Nevada

Nevada Medicaid

• Contact this group if/when:
  • you would like to or need to apply for Medicaid in Nevada
• General Information on Medicaid
• Sign Up for Nevada Medicaid

Nevada Medicare

• Contact this group if/when:
  • you or your child are 65 years or older and are now eligible for medical insurance through Medicare

Healthcare.gov

• Contact this group to:
  • Access a market of health insurance providers and plan options available to you

TRICARE West

• Contact this group if/when:
  • You are searching for more information on TRICARE in Nevada

Nevada Health Link

• Contact this group for:
  • assistance finding the right Nevada health plan for you or a loved one
  • information on the benefits you are eligible for

Special Eligibilities & Waivers

Social Security Administration – Disability

• Contact this group if/when:
  • you have been told to may be eligible for Supplemental Security Income, often available to those with disabilities
  • Social Security Disability Insurance pays benefits to you and certain members of your family if you are “insured,” meaning that you worked long enough and paid Social Security taxes
  • Supplemental Security Income pays benefits based on financial need

Katie Beckett Eligibility Option 

• Contact this group to:
  • Access and apply for Supplemental Security Income (SSI) available to children with disabilities

Newborn Screening Support

Nevada Newborn Screening Program

• Contact this group for:
  • Information on Nevada’s Nevada Newborn Screening Program based out of the Nevada State Public Health Laboratory

Early Childhood Support

Nevada Early Intervention Programs

• Contact this group if/when:
  • you have concerns (or would like more information) about developmental milestones and delays for young children

Early Periodic Screening, Diagnostic, and Treatment (EPSDT)

• Contact this group if/when:
  • you have any concerns about your children’s health, “HEALTHY KIDS” CAN HELP YOU – we all want Nevada’s children to grow up healthy.

Health Care Support

Nevada Medical Home Portal

• Contact this group if/when:
  • you would like reliable information about children and youth with special health care needs (CYSHCN) in Nevada
  • a one-stop shop for:
    • Families
    • Physicians and Medical Home teams
    • Other Professionals and Caregivers

Contact these groups for health care information specific to your area of Nevada:

• Southern Health District
• Carson City Health and Human Services
• Washoe County Health District

Contact these groups for health care information for specific diseases, disorders, conditions, or disabilities

National Organization for Rare Disease (NORD) 

• Contact this group to:
  •  Connect with an organization committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Dreamsickle Kids Foundation

• Contact this group if/when:
  • You would like resources specific to Nevada regarding Sickle Cell Disease (SCD) and other rare diseases
• Dreamsickle aims to improve equity and access to care for the communities affected by such diseases

• Blind Center of Nevada
• Nevada Early Hearing Detection and Intervention 
• Rehabilitation Division Services 
• Title V Maternal and Child Health Help line 

Education Support

Nevada PEP (Strengthening Families with Education, Empowerment, Encouragement)

• Contact this group to:
  • access training and workshops to help children with special needs (birth to age 26)
  • connect with a network of families with special needs in Nevada

• A developmental delay or missing milestones can sometimes be a “red flag” for a genetic condition.
• If you have concerns about your child’s development, please talk to your child’s doctor. You can find more resources to help you do that, here.

• MSRGN created a developmental delay algorithm that provides guidance for primary care clinicians in determining the cause of developmental delay, including the initial genetic evaluation. If you have concerns about your child’s development you can share this algorithm with your child’s doctor:
• View the Algorithm (for Healthcare Professionals)
• Learn more about the Algorithm

• Vickie (Co-Lead)
• Debra
• Erika
• Kate
• Lex
• Michael
• Robbin
• Shivangi (Shivi)
• Susanna
• Hannah