Mayo Clinic Archives - Inspire Corporate

Next Generation Online Health Communities

Next Generation Online Health Communities: Data empowering patients and caregivers improves care and accelerates research By Richard Tsai The World Orphan Drug Congress USA 2020 (WODC 2020) provided four days of powerful panels and keynotes about collaborations, successes and failures in creating what rare disease patients and families need and desire most – effective treatments for their conditions. In one failure turned to success, Kim Stephens shared her story involving inappropriate clinical trial endpoints. Stephen’s son has Hunter Syndrome, an extremely rare inherited condition where children lack an essential enzyme in their cells that eliminates waste . [...]

Doing Better and Feeling Worse: Patients with Long-term Conditions Describe Treatment Side Effects

Doing Better and Feeling Worse: Patients with Long-term Conditions Describe Drug Side Effects By Kathleen Hoffman, PhD, MSPH We live in fortunate times; people are now described as “living with” conditions. As an article in BioMed Central Health Services Research put it: Where previous generations experienced episodes of infectious and acute disease that were often rapidly lethal because there were few effective treatments,... major changes in the epidemiological and demographic landscape have led to increasing numbers of people with chronic or long term conditions such as diabetes and asthma; living with and surviving potentially life-limiting conditions, [...]