House Adopts Rep. Faris’ Rare Disease Day Resolution

Legislation shines light on severity of rare diseases throughout the state
Wednesday, March 1, 2017

LANSING — The Michigan House of Representatives adopted a resolution today introduced by state Rep. Pam Faris (D-Clio) declaring Feb. 28, 2017, as Rare Disease Day in the state of Michigan.

The inspiring story of 12-year-old Genesee County resident Devin Addington was the motivation behind the resolution. Devin was born with Barth syndrome, a rare genetic condition affecting about 200 people worldwide. According to the National Institutes of Health (NIH), a disease is rare if it affects less than 200,000 people. Barth syndrome is characterized by an enlarged and weakened heart, muscle weakness, recurrent infections and small stature, and frequently results in fatal infection or heart failure by age 3. Since a successful heart transplant at 9 weeks of age, Devin has grown up to beat the odds and offer hope to other families and those with rare diseases.

“Rare Disease Day draws awareness to the many lesser-noticed rare diseases that impact thousands of Michigan citizens,” said Rep. Faris. “Devin Addington is a great example of the happier outcomes available when awareness and research result in improved diagnosis and appropriate medical treatment.”

For the 7,000 known rare diseases, there are only about 450 FDA-approved treatments. This means affected families often are left without resources and an existing network of support. Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care.

EURORDIS, the organization representing rare disease patients in Europe, established Rare Disease Day in 2008, and it is now observed in more than 80 nations. Rare Disease Day takes place every year on the last day of February. Usually observed on Feb. 28, it falls on Feb. 29 in leap years — the rarest day on the calendar — to underscore the nature of rare diseases and the additional struggles rare disease patients face.

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