POLICY & LAWMAKERS

Addressing the Unique Challenges of Rare Diseases Through Informed Policymaking

Understanding and addressing the unique challenges faced by individuals living with rare diseases requires informed and proactive policymaking. While each rare disease affects a relatively small number of individuals, the collective impact on patients, families, and the healthcare system is profound. As Chair of the Nevada Rare Disease Advisory Council (RDAC), I am committed to ensuring that our policymakers have the resources and insights needed to create meaningful change for this underserved community.

Policymakers play a pivotal role in shaping legislation that can improve the lives of individuals with rare diseases. From expanding access to early diagnostics and treatments to supporting research initiatives and fostering equity in healthcare, your decisions can lead to transformative outcomes for patients and families. To assist in this critical work, we have compiled a curated list of resources designed to support your efforts.

These resources are tailored to equip you with the knowledge and tools needed to craft policies that ensure effective, compassionate, and sustainable solutions for individuals living with rare diseases. By leveraging them, you can make informed decisions that promote better healthcare outcomes, support groundbreaking research, and meet the needs of Nevada’s rare disease community.

The Nevada RDAC is committed to being a partner in this effort, offering expertise and serving as a bridge between policymakers, patients, and healthcare providers. Together, we can address the unique needs of rare disease patients and create a brighter future for all Nevadans.

NORD offers educational materials, patient assistance programs, and research opportunities. They provide a rare disease database and resources for medical professionals.

Provides policy briefs, position papers, and resources focused on European rare disease legislation, patient rights, and healthcare policies.

A program of the EveryLife Foundation for Rare Diseases that offers advocacy tools, legislative scorecards, and policy updates specifically tailored for lawmakers.

Focuses on accelerating biotech innovation for rare diseases through public policy, offering resources like policy briefs, economic impact studies, and advocacy toolkits.

Provides advocacy resources, legislative updates, and policy recommendations to support the creation and implementation of effective rare disease policies.

Offers guidance on orphan drug development, regulatory information, and resources on rare disease therapies.

A comprehensive database offering information on rare diseases and orphan drugs, including policy reports and recommendations for lawmakers.

Provides detailed information and resources on genetic and rare diseases, including policy-related publications and research findings.

Offers resources and strategic plans for rare disease research, fostering international collaboration and informing policy development.

Raises awareness and provides educational resources and policy briefs to support lawmakers in understanding the impact of rare diseases on patients and healthcare systems.

Provides policy recommendations and action plans to improve the diagnosis and care of children with rare diseases.

Provides each state’s Medicaid Program to examine what each program states they cover related to genetic services.