The treatment of Rett Syndrome (RTT), a rare, genetic neurological disorder affecting young children that leads to severe impairments, is continuing to evolve. The first therapy was approved in March 2023, and with several investigational assets on the horizon, there is a critical need to educate both community-based clinicians and Centers of Excellence on this change to the standard of care. […]
PlatformQ Health is known for its outcomes-driven education. At this year’s European Conference on Rare Diseases, we co-presented two posters highlighting outcomes and lessons learned from recent programming. […]
In the wake of FDA approvals for treating myasthenia gravis (gMG, healthcare providers have the ability to individualize treatment. As these new therapies become adopted, it’s crucial to educate patients and providers about issues such as disease presentation, comorbidities, and patient preferences that may impact treatment decisions. […]
PlatformQ Health is excited to share that our poster session “Incorporating the Patient Voice in Rare Disease Education: Multi Stakeholder Collaborations to Improve Diagnosis, Quality of Care, and Outcomes” was selected to be presented both at the 2023 NORD Breakthrough Summit and at the Lighting Round Poster Presentations taking place from 4:30-5:00 PM on Monday, October 16. […]
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) […]
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. […]
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 […]
A year-long initiative to produce rare disease digital education made a positive change on clinical practice and patient outcomes. […]
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 […]
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 […]
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 […]