Healthcare Education & Learning

Developed in collaboration with women with intellectual and developmental disabilities (IDD), healthcare professionals, and researchers, this guide provides accessible information to help women understand their health and advocate for their healthcare needs. Topics include preparing for medical appointments, reproductive health, preventive screenings, wellness, requesting accommodations, and communicating with healthcare providers.

A practical guide to genetic testing and the diagnostic process for patients and families seeking answers about a suspected rare or genetic condition.

Self-Advocacy Solutions is an initiative of the Oklahoma Developmental Disabilities Council that supports individuals with developmental disabilities in building self-advocacy skills, strengthening leadership, and increasing participation in decisions that affect their lives and communities.

An NIH-funded network that supports collaborative clinical research, study enrollment, and data sharing for hundreds of rare diseases through research consortia and patient advocacy partnerships.

An overview of services SoonerCare may cover, including durable medical equipment, therapies, transportation, case management, and other medically necessary care, subject to program rules.

A central collection of tools for SoonerCare members, including provider search, benefits information, transportation, member rights, handbooks, videos, and care coordination links.

Consumer-friendly information about genetic conditions, genes, chromosomes, inheritance, genetic testing, and genomic medicine from the National Library of Medicine.

Free educational materials about insurance, disability, medical costs, employment protections, and other practical issues that can affect access to care.

Searchable registry of clinical studies and research opportunities.

Provides resources and guidance to help youth with special health care needs and their families prepare for the transition from pediatric to adult health care. Supports families in understanding the transition process, building self-advocacy skills, and planning for greater independence in managing health care needs.
The program also connects families with transition resources and a Health Care Transition Coordinator. Its online transition toolkit is currently under development.

Educational resources promoting understanding of genetic testing and genetic conditions.

Education and guidance to help people understand genetics, genetic testing, and related decisions.

The Rare Disease Curriculum is a seven-module, asynchronous online learning program developed in collaboration with the Rare Disease Diversity Coalition (RDDC) to equip healthcare professionals, caseworkers, patients, caregivers, and advocates with foundational and applied knowledge across the rare disease landscape.

Designed for equitable access across diverse care settings and schedules, each module includes clear learning objectives, culturally appropriate content, and a knowledge check to validate comprehension. The curriculum’s goal is to close the persistent gap in rare disease education within the healthcare system- helping providers recognize warning signs earlier, correct common misconceptions, and connect patients to appropriate resources sooner, ultimately reducing diagnostic delays and improving outcomes for the millions of people affected by rare disease.