Brain Tumors-What patients and their caregivers need-An Inspire Insights: Engage Case Study

Brain Tumors - What patients and caregivers need - An Inspire Insights: Engage Case Study By Monica St. Claire Almost 80,000 adults will be diagnosed with brain or spinal cord tumors in the US this year.1 Seven hundred thousand are living with brain tumors in the US today.1 Although extensive media coverage of political figures, Joseph “Beau” Biden and Senator Edward “Ted” Kennedy, as well as Senator John McCain’s July 2017 diagnosis, has placed a spotlight on an extremely aggressive and rare brain cancer, glioblastoma, there are actually over 120 different types of brain or spinal cord [...]

Boosting Engagement with Inspire Promote: Sponsored Content

Boosting Engagement with Inspire Promote: Sponsored Content By Odin Soevik Last year we created a new Promote offering - Inspire Promote: Sponsored Content. Sponsored Content, a form of native advertising, allows clients to publish long-form, brand-sponsored content with the look and feel of posts within the discussion feed of our communities. (See, Turning Visitors Into Customers: Introducing Sponsored Content On Inspire). Unlike banners or other advertising products, Inspire Promote: Sponsored Content blends almost seamlessly into the feed. Yet we are careful to follow regulatory guidelines that ensure that the content is clearly labeled and not misleading to members and [...]

Launching communities with Inspire: The Pancreatic Neuroendocrine Tumor (PNET) Support Community

Launching communities with Inspire: The Pancreatic Neuroendocrine Tumor (PNET) Support Community For patients and caregivers facing rare cancers, finding others going through the same experience is challenging.  Yet, communicating with others who have “been there” is essential support. This can be especially true when statistics and online information about rare disease -  out of context -can be frightening. In 2011 Inspire’s moderation team found over 2900 mentions of carcinoid and over 200 mentions of neuroendocrine tumor in posts across all the cancer communities of Inspire.  Patients, caregivers, and others affected by pancreatic [...]

Finding Patients With Rare Cancers Quickly

Finding Patients with Rare Cancers Quickly Almost one-third of all cancer deaths are caused by rare cancers but rare cancers represent only between 23.4% and 27% of all cancer cases.1 Between 25 and 30 million Americans and around 30 million people in the European Union live with rare diseases.2 Rare cancers are classified under rare diseases and are defined by the EU Society of Medical Oncology as having an incidence of less than six occurring per 100,000 persons per year.3 The National Cancer Institutes define the incidence of rare cancers as 15 per 100,000 persons per year.4 [...]

Finding the Rarest of the Rare for Market Research

Finding the Rarest of the Rare for Market Research: Patient Journey Mapping Through In-depth Interviews People with rare diseases have poorly understood patient journeys.  Recently, Inspire conducted a project for a client to identify unmet needs and uncover the frustrations and challenges of a group of hard-to-find patients with an extremely rare condition, Primary Periodic Paralysis or PPP which affects approximately 4,000 to 5,000 diagnosed individuals in the US. PPP is an exceptionally rare genetic neuromuscular disorder which involves the ion channels in muscular membranes. Children of someone who carries the condition have a 50-50 chance of [...]