Whereas, a rare disease is defined in the United States s a disorder that affects fewer than 200,000 American at any given time;

Whereas, approximately 50 percent of patients suffering from a rare disease are children under the age of 18;

Whereas, about 80 percent of the approximately 7000 rare disease are linked to genetic origins while the remaining 20 percent are caused by either bacterial or viral infections, allergies and environmental causes, or unknown causes;

Whereas, patients’ quality of life is also affected negatively by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of these diseases;

Whereas, the joint efforts of many rare disease patient organizations both locally, nationally, and internationally see to increase awareness amount the general public, healthcare providers, researchers, and policy makers about rare diseases and their detrimental effects on patient’s lives; and

Whereas, we wish to lend support to the estimated 290,000 Utah residents who live with a rare disease and their families, as well as to organizations and individuals who work tirelessly in our state to provide further education and research about rare diseases;

Now, therefore, I, Gary R. Herbert, governor of the state of Utah, do hereby declare

February 29, 2016, as

Rare Disease Day in Utah

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About the author

Gina

Gina began working tirelessly as an advocate for the rare and undiagnosed diseases community several years ago after her and her family moved to Utah. She is the Co-founder and Executive Director of the Rare and Undiagnosed Network (RUN), Chair of Utah Rare, and Utah Ambassador for National Organization on Rare Diseases (NORD).

Gina is currently undiagnosed and the mother of three children with an undiagnosed genetic dysfunction. She is advocating for clinical whole genome sequencing covered by insurance companies and hopes to help rare and undiagnosed families emotionally and financially.

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