Areas of Focus:
Recognizing the complex nature of rare diseases, the substantial unmet needs, and the urgency associated with these conditions, we understand the importance of tackling these challenges methodically. With rare diseases encompassing a broad spectrum of conditions, the NV-RDAC has agreed to concentrate on several key categories. Specifically, the NV-RDAC members have collectively decided to prioritize initial efforts on three main categories of rare diseases:
1) Childhood Cancers of All Types: This includes infants (<1), children aged 1-9 (with specific age ranges of 12-24 months, 25 months to 4 years, and 5-9 years), and adolescents aged 10-14 and 15-19.
2. Factor Deficiencies and Inherited Platelet Disorders: These conditions potentially impact individuals across various age groups, including children, adolescents, and adults.
3. Newborn Screening Conditions: Currently, Nevada’s newborn screening program encompasses 57 conditions, affecting infants (<1) and potentially individuals across various age groups as they mature.
NV-RDAC's Foundational Pillars
1. Awareness and Education
2. Care and Support
3. Research and Data
These three pillars serve as the guiding framework for our strategic endeavors, underscoring our commitment to improving the rare disease landscape in Nevada.
The NV-RDAC’s overall strategy plays a vital role in aligning the council’s activities for the next few years. As we progress, the council is expected to expand the number of rare diseases we focus on and will evolve our efforts accordingly. Nevertheless, the pillars we have outlined will serve as the solid foundation of our collective efforts for all rare diseases that we determine need our attention within the state of Nevada, guiding us with clear goals and objectives.