How Has COVID-19 Impacted Patients with Rare Conditions?
How Has COVID-19 Impacted Patients with Rare Conditions? By Judy Chandler Over 600,000 Inspire members are affected by rare conditions. As a vital partner to 40 rare disease non-profit advocacy organizations, Inspire’s [...]
October 13th is Metastatic Breast Cancer Awareness Day
October 13th is Metastatic Breast Cancer Awareness Day By Kathleen Hoffman, PhD, MSPH The symbol for breast cancer awareness is a pink ribbon. But for people with the disease, one month and [...]
Patients Are The Best Resource For Defining Study Endpoints
Patients Are The Best Resource For Defining Study Endpoints By Robert Gardner In September, the World Orphan Drug Congress USA Fall Webinar series opened with a program called: “Understanding the Novel Challenges [...]
September is Blood Cancer Awareness Month
September is Blood Cancer Awareness Month By Kathleen Hoffman, PhD, MSPH The term “blood cancer” encompasses so many complex disorders that Inspire has several support communities focused on blood cancers, including groups [...]
For Ovarian Cancer Awareness Month: Teal Sisters Support Each Other and Discuss Treatments on Inspire
For Ovarian Cancer Awareness Month: Teal Sisters Support Each Other and Discuss Treatments on Inspire By Kathleen Hoffman, PhD, MSPH September is Ovarian Cancer Awareness Month. The Ovarian Cancer Research Alliance (OCRA), [...]
Online Health Communities Change Patients’ Journeys: A Live Virtual Roundtable
Online Health Communities Change Patients’ Journeys: A Live Virtual Roundtable By Dana Deighton In the fable of the Ugly Duckling, the duckling feels isolated by his differences until he discovers that he [...]
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 [...]
Accelerating Rare Disease Research
Accelerating Rare Disease Research By Richard Tsai COVID-19 has challenged the non-profit arena’s fundraising arm, which is largely based on face-to-face events like galas, runs and walk-a-thons. This limit on the number [...]
COVID-19 and a Future with Fundamental Design Shifts: Incorporating Virtual into Clinical Trials
COVID-19 and a Future with Fundamental Design Shifts: Incorporating Virtual into Clinical Trials By Kathleen Hoffman, PhD, MSPH On a recent Pharma Talk Radio podcast called, The Impact of COVID-19 on Clinical Trials: [...]
Customer Loyalty and Service Insights for the Pharmaceutical Industry
Customer Loyalty and Service Insights for the Pharmaceutical Industry By Dana Deighton “Only nine percent of U.S. consumers believe pharmaceutical and biotechnology companies put patients over profits.” This sentiment, found in the [...]