SENATE MEMORIAL 108

53rd legislature - STATE OF NEW MEXICO - first session, 2017

INTRODUCED BY

Nancy Rodriguez

A MEMORIAL

DECLARING FEBRUARY 28, 2017 "WORLD RARE DISEASE DAY" IN THE SENATE.

     WHEREAS, there are approximately seven thousand different types of rare diseases and disorders, with more being discovered each day; and

     WHEREAS, thirty million people in the United States are living with rare diseases, which equates to one in ten Americans; and

     WHEREAS, it is estimated that three hundred fifty million people worldwide suffer from rare diseases; and

     WHEREAS, if all the people with rare diseases lived in one country, it would be the world's third-most-populous country, according to statistics compiled by Global genes; and

     WHEREAS, in the United States, a condition is considered "rare" if it affects fewer that two hundred thousand people combined in a particular rare disease group; and

     WHEREAS, eighty percent of rare diseases are genetic in origin and are present throughout a person's life, even if symptoms do not immediately appear; and

     WHEREAS, approximately fifty percent of the people affected by rare diseases are children, and thirty percent of children with rare diseases do not live to see their fifth birthday; and

     WHEREAS, rare diseases are responsible for thirty-five percent of deaths in the first year of life; and

     WHEREAS, according to the EveryLife foundation for rare diseases, drug treatments have not been approved by the federal food and drug administration for ninety-five percent of rare diseases; and

     WHEREAS, during the first twenty-five years of the Orphan Drug Act, passed in 1983, only three hundred twenty-six new drugs were approved by the federal food and drug administration and brought to market for all rare diseases combined; and

     WHEREAS, although rare and genetic diseases, and many of their symptoms, are unfamiliar to many doctors, rare diseases as a whole represent a large medical challenge;

     NOW, THEREFORE, BE IT RESOLVED BY THE SENATE OF THE STATE OF NEW MEXICO that February 28, 2017 be declared "World Rare Disease Day" in the senate; and

     BE IT FURTHER RESOLVED that a copy of this memorial be transmitted to Global genes.

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