Recognizing Rare Diseases

Posted on Feb. 28th, 2011 at 2:15pm

There are nearly 30 million people living with rare diseases in the United States, another 30 million in Europe and millions more in all parts of the world. More than 60 percent of those affected are infants or children. Due to the large number of rare diseases (more than 5,000) and low prevalence of each disease, resources that lead to cures can be difficult to find. That’s why the European Organization for Rare Diseases (EURODIS) organizes an annual, global event on the last day of February to help draw attention to rare diseases and their impact on people’s lives.

Mead Johnson has a long history of developing specialized products to help children combat rare diseases, such as inborn errors of metabolism. In 1958, we launched Lofenalac, the first commercially available special metabolic formula for the dietary management of Phenylketonuria (PKU). Since then, we have expanded support for individuals with PKU by providing Phenyl-Free 1, 2 and 2HP. We have also introduced 14 other metabolic formulas and a range of products designed for other special dietary needs.

In China, we are working with the Ministry of Health to raise awareness of and implement widespread screening for PKU, which – if undiagnosed and untreated – puts infants at risk for brain damage and cognitive development challenges. In poorer parts of China, we have implemented a program to provide a free supply of Phenyl-Free to hundreds of infants annually. In Poland, we helped train medical teams to screen for PKU in newborns and have sponsored summer camps and educational conferences for children and their families living with PKU.

We are honored to work with organizations such as the National Organization for Rare Disorders (NORD) that help identify, treat and work towards a cure for rare diseases through education, advocacy programs, research and service.

For more information about Rare Disease Day, visit