February 2018

Rare Disease Day

Author: Emily Walsh Rare Disease Day was first established by the health organization EURORDIS in 2008 to bring greater awareness to conditions that typically escape widespread notice. Rare diseases are also known as orphan diseases, as they typically impact only a fraction of the population. It may not seem like a lot, but currently one in ten Americans are living with a rare disease. Congenital CMV is considered a "rare disease".

A Mother's Fight: Maine's CDC CMV Recommendations

Author: Laura Sweet LD 87 was referred to the Legislature’s Joint Standing Committee on Health and Human Services and a public hearing and work session took place in February 2017. The whole process moved much more quickly than I anticipated. We gathered other families and supportive members of Jane’s medical and early intervention teams to testify alongside us. The Committee voted not to pass the bill, but with the understanding that the Maine Center for Disease Control and Prevention (CDC-P) would convene a multi-disciplinary work group to review issues surrounding congenital CMV and make recommendations to the Committee within a year.