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Scientists Can Advance Research By Joining with Patient-Advocacy Groups

Like most Americans who are not scientists, I have been relatively ignorant of how science is conducted and funded until recently. In 1992 I founded a nonprofit organization to help women who have chronic vulvar pain. Directing a grass-roots patient-advocacy organization has brought my attention to the critical lack of funds available for basic research. Although urging scientists to lobby Congress themselves is certainly a reasonable strategy for obtaining more funds, I have a suggestion. Wh

Joanne Yount

Joanne Yount Like most Americans who are not scientists, I have been relatively ignorant of how science is conducted and funded until recently. In 1992 I founded a nonprofit organization to help women who have chronic vulvar pain. Directing a grass-roots patient-advocacy organization has brought my attention to the critical lack of funds available for basic research.

Although urging scientists to lobby Congress themselves is certainly a reasonable strategy for obtaining more funds, I have a suggestion. Why not join forces with the people who have the most at stake in basic research-those who suffer from disorders whose causes are not fully identified or for which completely effective treatments are not known?

In the United States there are literally hundreds of grass-roots patient-advocacy organizations. They represent thousands of people-sometimes hundreds of thousands of people-who suffer from arthritis, cancer, headaches, trigeminal neuralgia, fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome, and more. Many of...

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