Patient communities archives - Page 4 of 7

Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance
Patient insights, Patient communities, Patient-focused drug development

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

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 sore throat, high fever, migraine, my body was in horrible pain. I called the doc. After being masked, gloved and gowned I was whisked into an isolated room, handled like [...]

Mar 2021By Kathleen Hoffman, PhD, MSPH|0 Comments

The Race to Rescue Livers: Finding Treatments for NASH
Patient communities, Patient insights, Patient stories, Patient-centered healthcare

The Race to Rescue Livers: Finding Treatments for NASH

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 changes. NASH is a more serious form of NAFLD (non-alcoholic fatty liver disease) and can result in cirrhosis.4 Related to obesity and diabetes, but not to alcohol consumption, NAFLD already [...]

Mar 2021By Kathleen Hoffman, PhD, MSPH|0 Comments

COVID-19 vaccines and vulnerable populations: Over 26K participate in ongoing study
Patient insights, Patient communities, Patient-focused drug development

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

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 people with comorbidities, like cancer, psoriasis, asthma or sarcoidosis feel about getting vaccinated? If they have received the vaccines, how have they responded? It is now possible to find out [...]

Mar 2021By Richard Tsai|0 Comments

Where Do You Start When Searching for Exceptional Responders?
Patient insights, Patient communities, Patient-focused drug development

Where Do You Start When Searching for Exceptional Responders?

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 until whole genome sequencing (WGS) became available, it was impossible to scrutinize them. In 2012, researchers at Memorial Sloan Kettering used WGS to learn what caused the remarkable and durable [...]

Mar 2021By Richard Tsai|0 Comments

A Surprise Diagnosis: Chronic Kidney Disease
Patient communities, Patient insights, Patient stories, Patient-centered healthcare

A Surprise Diagnosis: Chronic Kidney Disease

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 CKD do not know they have it. You can be unaware even if you’re in serious danger of kidney failure. One in 2 people with very low kidney function who [...]

Mar 2021By Kathleen Hoffman, PhD, MSPH|1 Comment

Trying To Find More Answers About Tuberous Sclerosis Complex
Patient communities, Patient insights, Patient stories, Patient-centered healthcare

Trying To Find More Answers About Tuberous Sclerosis Complex

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 genes, TSC1 and TSC2, its manifestations vary widely depending on the nature of the mutation, which is why it is called “tuberous sclerosis complex.” It’s a complex genetic disorder. It [...]

Feb 2021By Kathleen Hoffman, PhD, MSPH|0 Comments

Portraits of resilience: How patients and caregivers cope through the COVID pandemic
Patient stories, Patient communities, Patient insights

Portraits of resilience: How patients and caregivers cope through the COVID pandemic

Portraits of Resilience: How Patients and Caregivers Cope through the COVID Pandemic By Richard Tsai The word “storytelling” invokes a pleasant image of listeners around a campfire, listeners from any era and any culture. It could, however, just as accurately evoke an image of brain chemistry that creates direct experience and even changes behavior: I originally discussed this concept in an earlier post, “Why Storytelling Builds Brands.”1 Research shows that people remember stories better than mere facts and that the brain can store more information and retrieve it more easily when it is in story form.2 Storytelling [...]

Feb 2021By Richard Tsai|0 Comments

Eosinophils: Friend or Foe? Eosinophilic Disorders
Patient communities, Clinical trials, Patient insights

Eosinophils: Friend or Foe? Eosinophilic Disorders

Eosinophils: Friend or Foe? Eosinophilic Disorders By Kathleen Hoffman, PhD, MSPH Eosinophils are amazing, power-packed cells of the innate immune system. Loaded with granules of cytokines, chemokines, RNAses, cationic proteins, growth factors and more, these leukocytes were thought to be the body’s primary tool to destroy parasites. Now, however, eosinophils are being understood as regulators of inflammation and tissue regeneration. They are also involved in maintaining the defensive structure of the epithelium, residing in mucosal tissue that interfaces with the environment. Additionally, they act as antigen presenting cells (APCs), communicating between the innate and adaptive immune systems. [...]

Feb 2021By Kathleen Hoffman, PhD, MSPH|0 Comments

5 Steps to Creating a Vibrant Online Patient Community: Melanoma Research Alliance’s Melanoma>Exchange on Inspire
Patient communities

5 Steps to Creating a Vibrant Online Patient Community: Melanoma Research Alliance’s Melanoma>Exchange on Inspire

5 Steps to Creating a Vibrant Online Patient Community: Melanoma Research Alliance’s Melanoma>Exchange on Inspire By Judy Chandler, MPH, CHES Inspire launched a melanoma patient and caregiver support community in 2014, but was looking for a non-profit partner to contribute melanoma expertise and resources to community members. In 2017, the Melanoma Research Alliance (MRA) started expanding its efforts beyond research to also include patients and caregivers. That’s when the MRA and Inspire joined forces and launched the Melanoma > Exchange Support Community on Inspire. Inspire is a true partner for MRA in our work to better serve [...]

Jan 2021By Judy Chandler|0 Comments

What’s one of the top ten mysterious diseases? Sarcoidosis
Patient communities, Patient insights

What’s one of the top ten mysterious diseases? Sarcoidosis

What’s one of the top ten mysterious diseases? Sarcoidosis By Kathleen Hoffman, PhD, MSPH Rare disease sufferers may be few in number for a particular condition, but they are an army of survivors when they’re together. Sarcoidosis is one of the 3000 rare diseases represented in Inspire’s community. With 600,000 Inspire members affected by rare conditions, the over 95,000 making up the Sarcoidosis audience on Inspire or “sarkies,” as they call themselves, are in good company. Dr. Michael Iannuzzi, the Edward C. Reifenstein Professor and Chair at the State University of New York-Upstate Medical University, calls sarcoidosis [...]

Jan 2021By Kathleen Hoffman, PhD, MSPH|2 Comments