News and InfoDec 2016
2704, 2021

A Burden Shared: Finding Support for Major Depressive Disorder

By |April 27th, 2021|Patient communities, Patient insights, Patient stories, Patient-centered healthcare|0 Comments

A Burden Shared: Finding Support for Major Depressive Disorder By Kathleen Hoffman, PhD, MSPH The CDC reported in March that the number of people in the US experiencing recent symptoms of an anxiety or depressive disorder increased from 36.4% to 41.5% during the pandemic.1 Given the circumstances, this 5% uptick in people reporting mental distress isn’t surprising. What should catch our attention, however, is that over 1/3 [...]

2004, 2021

Familial Amyloidosis: “So Rare You’ll Never See Anyone With It”

By |April 20th, 2021|Patient communities, Patient insights, Patient stories, Patient-centered healthcare|0 Comments

Familial Amyloidosis: "So Rare You’ll Never See Anyone With It" By Kathleen Hoffman, PhD, MSPH Until recently, the only treatments for a rare disease called familial amyloidosis were symptom management or a liver transplant. Not only is the disease inherited, genetic, and rare, its incidence varies widely by region: The NIH says it occurs in about 1 in 583 people in some parts of Portugal, compared to [...]

1304, 2021

Social Media Communities: Blazing a Trail to New Cures

By |April 13th, 2021|Patient-centered healthcare, Patient communities, Patient insights, Patient stories|1 Comment

Social Media Communities: Blazing a Trail to New Cures By Kathleen Hoffman, PhD, MSPH The press makes big news of misinformation spread on social media, but two virtual conferences last week -- Patients as Partners USA and Collaboration for Outcomes using Social Media in Oncology (COSMO) -- featured speakers who became patient advocates for their diseases after participating in social media discussion groups. These speakers found and [...]

604, 2021

Heart to Heart Talks: Inspire Members and Heart Disease

By |April 6th, 2021|Patient communities, Patient insights, Patient stories, Patient-centered healthcare|2 Comments

Heart to Heart Talks: Inspire Members and Heart Disease By Kathleen Hoffman, PhD, MSPH Heart disease is the leading cause of death in the US among men and women, and for most racial and ethnic groups. Responsible for one in four deaths every year, more people die of heart disease than they do of cancer.1 “Heart disease” is a general category, but the most common kind of [...]

3003, 2021

Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance

By |March 30th, 2021|Patient insights, Patient communities, Patient-focused drug development|0 Comments

Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance By Kathleen Hoffman, PhD, MSPH “The sickest I've ever been!" wrote a participant in Inspire’s COVID-19 HealthJourney survey about surviving COVID-19. Another went into greater detail when asked to share their COVID-19 story. I’ve had systemic lupus (SLE) and Discoid Lupus for 25 years. I’ve been on Hydroxychloroquine since my diagnosis. [In March] I woke with a strep-like [...]

2303, 2021

The Race to Rescue Livers: Finding Treatments for NASH

By |March 23rd, 2021|Patient communities, Patient insights, Patient stories, Patient-centered healthcare|0 Comments

The Race to Rescue Livers: Finding Treatments for NASH By Kathleen Hoffman, PhD, MSPH There is a race to develop drugs to treat non-alcoholic steatohepatitis, commonly called NASH. NASH, an aggressive form of liver disease causing inflammation and scarring, already affects 3-12% of the entire US population.1,2 What’s the incentive? There’s currently no approved treatment, and it can be fatal.3 The current standard of care is lifestyle [...]

1603, 2021

COVID-19 vaccines and vulnerable populations: Over 26K participate in ongoing study

By |March 16th, 2021|Patient insights, Patient communities, Patient-focused drug development|0 Comments

COVID-19 vaccine and vulnerable populations: Over 26K participate in ongoing longitudinal study  By Richard Tsai Crowd-sourcing info for a friend: have any of you who have lupus SLE and/or discoid taken the vaccine? Which one? What were your side effects? Thanks for sharing. — Brittney Cooper (@ProfessorCrunk) March 9, 2021 COVID-19 vaccines have been released. Are people hesitant about getting vaccinated? How are people responding? How do [...]

903, 2021

Where Do You Start When Searching for Exceptional Responders?

By |March 9th, 2021|Patient insights, Patient communities, Patient-focused drug development|0 Comments

Where Do You Start When Searching for Exceptional Responders? By Richard Tsai Before 2012, if a cancer clinical trial had only one successful remission amid a field of failures, the drug under trial was thought to be unsuccessful. We weren’t asking a key question: What made it work for that one participant? The one remission was an exceptional responder. Exceptional responders are in every clinical trial, but [...]

203, 2021

A Surprise Diagnosis: Chronic Kidney Disease

By |March 2nd, 2021|Patient communities, Patient insights, Patient stories, Patient-centered healthcare|1 Comment

A Surprise Diagnosis: Chronic Kidney Disease By Kathleen Hoffman, PhD, MSPH March is National Kidney Month, when communities across the country work to raise awareness about kidney disease. Not too worried? You might want to check: The CDC estimates that 15% of adults are estimated to have Chronic Kidney Disease (CKD). That’s 37 million people in the US alone. Even worse: Most (9 in 10) adults with [...]

2302, 2021

Trying To Find More Answers About Tuberous Sclerosis Complex

By |February 23rd, 2021|Patient communities, Patient insights, Patient stories, Patient-centered healthcare|0 Comments

Trying To Find More Answers About Tuberous Sclerosis Complex By Kathleen Hoffman, PhD, MSPH Tuberous Sclerosis Complex (TSC) is a “rare” genetic disease: According to the Tuberous Sclerosis Alliance, Inspire’s community partner, “At least two children born each day will have tuberous sclerosis complex.”1 Classifying a disease that affects a million people worldwide as “rare” doesn’t comfort patients with TSC. Created by mutations in one or two [...]