HJR149 Summary

• Recognize February 28, 2018, and the last day of February in each succeeding year as Rare Disease Day in Alabama.

• Recognize February 2018 and every February in each succeeding year as Rare Disease Awareness month.

• Approximately 7,000 rare diseases collectively affect almost 30 million Americans, with nearly 500,000 Alabama residents affected by rare diseases.

• Eighty percent of rare diseases are genetic in origin, 50 percent affect children, and 95 percent of Americans with rare diseases have no FDA-approved treatment specific to their condition.

• Rare diseases can cause chronic, progressive, disabling, and life-threatening conditions with significant impacts on patients' physical, mental, emotional, and financial well-being and their families.