How Far Would You Go to Save Your Little Girl?
In what felt like an instant, the Duffs had been thrust into the heartbreaking realm of rare diseases, where treatments are few and money for research is hard to come by. As it turns out, there are thousands of rare diseases that affect hundreds of millions of people around the world. Yet pharmaceutical companies aren’t exactly racing to develop specialized drugs that only a relative handful of people need. The National Institutes of Health has an Office of Rare Diseases Research to address the need, but resources are limited and there are scores of patients who have been left to their own defenses. In the great cost-benefit scheme of modern medicine, the math doesn’t add up, so families like the Duffs are often told to make their loved ones comfortable and prepare for the worst. [Full Article]