Rare Disease Archives - PlatformQ Health

The Power of Continuing Medication Education to Enhance Health Care Providers’ Index of Suspicion of Rare Dermatologic Conditions

Posted on September 14, 2023 by alloyd

Education about rare diseases is crucial to reducing time to diagnosis and providing optimal care for patients. Recently, PlatformQ Health worked with our strategic partner the National Organization for Rare Disorders (NORD) to produce digital education for health care providers (HCPs), focused on the rare dermatological condition prurigo nodularis. The 60-minute continuing medication education (CME) […]

A Spotlight on Rare Disease Products: From Launch & Beyond

Posted on September 14, 2023 by alloyd

Promoting new therapies in the rare disease space comes with unique challenges. There are many hurdles to gaining market adoption, particularly for those among the first to market in a disease state. […]

Addressing the gulf between patient and provider perspectives

Posted on September 14, 2023 by alloyd

Tethered education: Aligning patients and providers What spurs patients to choose one treatment option over another? What are the hurdles patients face when presented with a newly FDA approved drug? What barriers to change keep physicians from prescribing new treatments? The practice of shared decision making can help answer these crucial questions. This approach can […]

Rare Disease Digital Education Infographic

Posted on September 14, 2023 by alloyd

A year-long initiative to produce rare disease digital education made a positive change on clinical practice and patient outcomes. […]

Idiopathic Pulmonary Fibrosis (IPF) CME Patient Education

Exploring Our Current Knowledge of the Pathophysiology of Idiopathic Pulmonary Fibrosis: New CME

Posted on January 8, 2020 by

Find new Idiopathic Pulmonary Fibrosis CME on ResInsightsLive, and a program designed for patients and their families on RareDiseaseLive. Idiopathic pulmonary fibrosis (IPF) is a rare pulmonary disease caused by the formation of scar tissue in the lungs without any known triggering factor. Across the globe, five million people are affected with a prevalence […]

Carcinoid Syndrome: The Tumor and the Hormones

Posted on January 8, 2020 by

He lay there in the ICU bed with his family standing by in the waiting area. As the intern on call, I was called to his bedside once again because his blood pressure plunged dangerously low. Unfortunately, his prognosis was poor, in fact terminal. The medical team knew this would be the last time he […]

Rare Disease Day 2018

Posted on January 8, 2020 by pqadmin

World Rare Disease Day is celebrated on the last day of February each year (often February 28, “rarely” on leap day). Since 2008, this day has grown into a global initiative involving more than 90 countries and hundreds of cities to raise awareness of rare diseases and encourage researchers and leaders to address the needs […]

Rare Diseases: Why We All Need to be Aware

Posted on January 8, 2020 by

While rare diseases are uncommon, there are a multitude of them. In the US, there are approximately 7,000 diseases that are considered to be rare. It is approximated that there are nearly 300,000,000 patients around the world who are diagnosed with a rare disease. In the US, a rare disease is defined as any disease […]

Rare Disease Information Sources for Primary Care Providers

Posted on January 8, 2020 by

Based on a survey conducted in January 2016, the Association for Comprehensive Care in Rare Diseases (ACCORD) published two white papers on primary care medicine for patients living with a rare disease. The first paper, based on a survey of 536 primary care providers (PCPs), and described in a previous blog post, concluded PCPs lacked […]

Rare Diseases and How Primary Care Physicians Can Work with Patients

Posted on January 8, 2020 by

The Association for Comprehensive Care in Rare Diseases (ACCORD) recently conducted a novel survey around primary care in patients with rare diseases. To better understand physicians’ viewpoint on the topic, the team at ACCORD conducted a survey of 536 clinicians who reported having at least one patient in their practice who received care from […]