MDCH supports Rare Disease Day, recognizes importance of Newborn Screening

Contact: Jennifer Smith 517-241-2112

For Immediate Release: Februar 27, 2015

LANSING, Mich. Today nearly one in ten Americans live with a rare disease - affecting 30 million people - and two-thirds of these individuals are children. To help raise awareness and highlight the importance of Michigan’s Newborn Screening Program, Governor Rick Snyder has declared February 28, 2015 as Rare Disease Day in Michigan.

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people. Michigan’s Newborn Screening Program helps diagnose and get babies to early treatment during the first days of life. On Rare Disease Day, Michigan residents are encouraged to take some time to learn more about the public health program that has been identifying babies with these conditions for 50 years.

Since 1965, more than 5,000 Michigan babies have been diagnosed and treated as a result of the Newborn Screening Program. The rarity of these diseases can make it difficult for affected individuals to receive an accurate diagnosis and proper care. Fortunately, for more than 200 Michigan babies or about one in 400 births every year, early detection and treatment is available for those identified with rare diseases on the newborn screening panel.

The theme of Rare Disease Day 2015, "Living with a Rare Disease", focuses on the lives of individuals with a condition, as well as the families, friends, and caretakers of affected individuals, whose lives are also impacted. Even with early diagnosis and treatment, individuals and families affected by rare diseases often experience problems such as reaching medical experts and paying for care. For residents recently diagnosed with a rare disease, there is support available in Michigan. Visit migrc.org/Directories/SupportGroup.aspx or www.geneticalliance.org to find support groups in your area.

Rare Disease Day was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD), a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.

For more information about Rare Disease Day in the U.S., visit www.rarediseaseday.us, and to search for information about rare diseases, visit NORD’s website at www.rarediseases.org.

For more information about the rare disorders on the Michigan newborn screening panel, visit www.michigan.gov/newbornscreening.

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