Congressman Marino’s Statement on “Rare Disease Day”
Washington, D.C.—Congressman Tom Marino (PA-10) released the following statement on H.Res.157, declaring the last day of February “Rare Disease Day.”:
“Yesterday I joined my colleagues in introducing H.Res 157 which designates the last day of February, each year, as “Rare Disease Day”. The objective of Rare Disease Day is to raise awareness of rare diseases and their impacts on the lives of their patients. The National Institute of Health defines a rare disease as one that affects less than 200,000 people and today there are over 7,000 rare diseases that affect close to 30 million people."
"As the father of a child with Cystic Fibrosis, I know the difficulty of living with a rare disease and the financial burdens of care and treatment for families. I was happy to see the president address the issue of rare diseases in his Joint Address to Congress and I will continue to use my position in Congress to advocate for robust funding to study and fight these diseases. It is my hope that one day we can make these rare, incurable diseases a thing of the past.”