Whereas rare diseases and disorders are those which affect small patient populations, typically populations smaller than 200,000 individuals in the United States; Whereas more than 7,000 rare diseases affect approximately 30,000,000 people in the United States and their families; Whereas children with rare diseases account for a significant proportion of the population affected by rare diseases; Whereas many rare diseases are serious, life-threatening, and lack an effective treatment; Whereas rare diseases and conditions cross the medical spectrum; Whereas individuals with rare diseases experience challenges that include difficulty in obtaining an accurate diagnosis, limited treatment options, and difficulty finding physicians or treatment centers with expertise in their disease; Whereas although over 750 drugs and biologics have been approved for the treatment of rare diseases by the Food and Drug Administration, millions of people in the United States have rare diseases for which there is no approved treatment; Whereas lack of effective treatments and difficulty in obtaining reimbursement for life-altering and often life-saving treatments remain significant challenges for individuals with rare diseases and their families; Whereas as a result of the Orphan Drug Act, there have been important advances in research of and treatment for rare diseases; Whereas the Food and Drug Administration has taken great strides in gathering patient perspectives to inform the drug review process as part of its Patient-Focused Drug Development program, an initiative that was reaffirmed under the Food and Drug Administration Reauthorization Act of 2017; Whereas the 115th Congress passed a 10-year extension of the Children’s Health Insurance Program, ensuring coverage for many children with rare diseases; Whereas both the Food and Drug Administration and the National Institutes of Health have established special offices to support and facilitate rare disease research and treatments