patient and caregiver perspectives Archives

Collaborating with Rare Disease Patient Advocacy Organizations

Collaborating with Rare Disease Patient Advocacy Organizations By Judy Chandler MPH, CHES The first Rare Disease Day took place on February 29, 2008, chosen because February 29 is a “rare date.” Since then, it has continued to occur on the last day of February. Inspire will participate in this year’s worldwide awareness effort to help inform the general public and policy makers about the impact of rare diseases on patients’ lives at the annual Rare Disease Day at National Institutes of Health with a poster and exhibit booth on February 28. Defined as affecting less than 200,000 [...]

Diversity in Clinical Trials: Being Left Out

Diversity in Clinical Trials: Being Left Out By Marina Shayevich Why do African Americans develop breast cancers with significantly higher basal gene expression? 1 Why do Hispanics develop type II diabetes at an earlier age than other groups? 2 Understanding the functional reasons for disease processes is necessary to develop targeted treatments. Yet because clinical research lacks sufficient diversity, reasons for and mechanisms of disease development are not fully understood. Some reasons for minority patient under-representation in clinical trials are known. For example, strict eligibility criteria, like chronic kidney disease,3 hypertension or diabetes exclusions, leave out many groups, [...]