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National Pediatric Research Network Act of 2012

Floor Speech

Location: Washington, DC


Mr. UPTON. Mr. Speaker, I yield myself 3 minutes.

Mr. Speaker, this legislation brings us a step closer to providing more help to children with unmet health needs, especially those with rare pediatric and genetic diseases.

According to the National Institutes of Health, the NIH, there are 6,800 rare diseases, and most of these conditions have no treatment or cure, and they primarily affect children. I would guess that everyone in this Chamber is personally aware of the devastating impact of these diseases with some family that they know. I, myself, have spent some time with a family from my district whose children have spinal muscular atrophy, SMA. It is a very rare pediatric disease that is the leading genetic cause of death in infants and toddlers.

These are great kids. I've got a picture of one of them here. When they came to see me, they told me that their names were Cinderella and Sleeping Beauty. They really are. These are just really marvelous children. They're great kids, and it's a source of real sadness that their disease is the kind that is often incurable and often untreatable.

The barriers to research on rare and genetic diseases are those that are common to most research. It's already difficult to initiate the experimental and lengthy research needed to find treatments and cures; however, when the population of patients is so small, maybe only a couple dozen in a State, these problems are even more difficult to solve.

This legislation is going to help us establish pediatric research networks and a consortia that are a proven way to overcome those gaps in research. Networks and consortia will be comprised of leading institutions that act as partners to consolidate and coordinate research efforts. It promotes efficiency and collaboration, especially when a disease affects just a small number of children.

Mr. Speaker, I would urge all my colleagues to support this bipartisan legislation. I look forward to a strong vote tonight and working with our colleagues in the Senate to make sure that this bill really does get to the President's desk and makes a difference for families that are in search of something that will help them with their kids.

With that, I reserve the balance of my time.


Mr. UPTON. Mr. Speaker, I yield myself 30 seconds.

I just want to again thank Mrs. Capps. As we met these families, we really did not know about these diseases until we saw their courage and what they do as they confront this every day. It's marvelous for me, as I now have visited my family that has this disease 2 years in a row. It's great to see them grow and remember where they were and to really think that there's going to be hope with the legislation that we can see that is done.

With that, I yield 5 minutes to the gentlelady from Washington State, Cathy McMorris Rodgers, who has also been, as we look at a bipartisan leadership, a real trooper to move this legislation not only through our committee, but now on the House floor.


Mr. UPTON. Mr. Speaker, in closing, I know the hour is late. I would just urge my colleagues to support this bipartisan legislation. I, too, commend every Member that's had a role here and truly appreciate the staff to get this bill prepared and ready for us to vote on tonight.

I yield back the balance of my time.


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