Redefining Life as a Patient and Caregiver : Experts by Experience 2018
Redefining Life as a Patient and Caregiver : Experts by Experience 2018 Parenting and caring for a child with a medical condition challenges Erin Moriarty Wade. She writes, “I know that [...]
Hacking clinical trials: Two awareness and protocol strategies invented by patients and caregivers that work
Hacking clinical trials: Two awareness and protocol strategies invented by patients and caregivers that work By Kathleen Hoffman, PhD Patients with life-threatening diseases aren’t waiting for someone to make participating in clinical [...]
Why peer-to-peer online patient communities are important to patients, caregivers and pharma
Why peer-to-peer online patient communities are important to patients, caregivers and pharma By Kathleen Hoffman, PhD What do patients and caregivers say about online patient communities? Inspire posts, podcasts, and patient advocates [...]
1.6 Million People Accelerate Medical Progress
1.6 Million People Accelerate Medical Progress When Brian Loew founded Inspire in 2005, he never dreamed of its impact on members, on himself and on the people who worked with him. “When [...]
Motivating change through online patient sharing
Motivating change through online patient sharing By Kathleen Hoffman, PhD MSPH Humans evolved as storytellers. Experiences of the weather, nature, life, and the world have been explained through legends and myths. Sharing [...]
Referring patients to clinical trials is personal, study shows
Referring patients to clinical trials is personal, study shows By Kathleen Hoffman, PhD MSPH Why is it so hard to get physicians to refer patients to clinical trials? One cynical assumption is [...]
Looking for Guidance? FDA and PFDD at “Patients as Partners” 2019
Looking for Guidance? FDA and PFDD at "Patients as Partners" 2019 By Hannah Eccard Pujita Vaidya, Senior Advisor, Patient Focused Drug Development (PFDD) program at the Center for Drug Development and Research [...]
Patient and caregiver perceptions of clinical trials: Preliminary findings
Patient and caregiver perceptions of clinical trials: Preliminary findings By Kathleen Hoffman, PhD, MSPH Many of you have been in Philadelphia for the “Patients as Partners Conference.” Yesterday, Hannah Eccard, Research manager [...]
A Look Across Inspire’s Annual Surveys
A Look Across Inspire’s Annual Surveys By Hannah Eccard Over the past four years, Inspire has conducted an annual survey of its members. Participation has been high, with an average of 10,000 [...]
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 [...]