authentic patient voice Archives

Social Listening to Understand the Unmet Needs of Patients
Patient insights

Social Listening to Understand the Unmet Needs of Patients

Social Listening to Understand the Unmet Needs of Patients By Marina Shayevich and Sara Ray Across healthcare, patients lament the imperfection of pharmaceutical treatment. Although grateful to have life saving and life improving medications, patients are often met with frustration at the limitations of their medications. Nowhere is that more evident than in rare diseases, where the rarity of the illness may lead to a scarcity of available, approved pharmaceutical treatment options. Many patients are left to turn to off-label medication use in the effort to get the best solution possible. Even then, these treatments do not [...]

A dazzle of zebras: Ehlers-Danlos Syndromes

A dazzle of zebras: Ehlers-Danlos Syndromes By Hannah Eccard On their website, The Ehlers-Danlos Society explains why people with Ehlers-Danlos Syndromes (EDS) call themselves zebras. “Medical students have been taught for decades that, ‘When you hear hoofbeats behind you, don’t expect to see a zebra.’ In other words, look for the more common and usual, not the surprising, diagnosis.” 1 People with EDS are the unexpected zebras. This rare connective tissue disorder characterized by joint hypermobility, skin elasticity and tissue fragility has recently, through the efforts of The Ehlers-Danlos Society, become more well known. Unfortunately many people [...]

Everything Your Organization Needs in One Place: Inspire Products

Everything Your Organization Needs in One Place: Inspire Products Inspire has four product lines available to address the needs of the life science industry and other healthcare organizations, like hospitals and clinics. Thousands of patients within Inspire’s communities are interested in and actively looking for opportunities to participate in clinical trials. They are members with rare diseases as well as more common conditions. They are asking each other questions like: “How do I know if a clinical trial is right for me? How do I know if I am right for a [...]