Michelle Miyagi’s Post

"By highlighting the needs of individuals with rare diseases, we can advocate for greater equity in healthcare access, treatment options, and support services. Everyone deserves access to timely diagnosis, quality care, and effective treatment, regardless of the rarity of their condition." Read more from Bruce ➡️ https://brnw.ch/21wHsrs #RareDiseaseDay #RareVoices #RareDisease #RareDiseaseAdvocate #RareDiseaseAwareness #PompeDisease #Pompe

Clinical care unfortunately tends to focus solely on disease treatment, often neglecting the physical functions of hospitalised patients. A best practice implementation project suggests that initiating physical activity as soon as possible in hospitalised #OlderAdults, once their medical condition is stable, can assist in preventing functional decline. 👇 https://ow.ly/vJLu50T1I1B #JBIEBHC #EBHC #EvidenceImplementation #ClinicalCare JBI EVIDENCE IMPLEMENTATION 國立陽明交通大學 National Cheng Kung University National Sun Yat-Sen University

Medical gaslighting is a term used to describe situations where healthcare providers dismiss or downplay a patient’s symptoms, leading the patient to question their own experiences and feelings. Discussing medical gaslighting is crucial within the rare disease community because it can lead to delays in diagnosis, inadequate treatment, and a profound sense of mistrust in the healthcare system. People living with rare diseases frequently endure long journeys in search of answers, and when their experiences are invalidated, it can compound the challenges they already face. By understanding the signs of gaslighting and learning effective strategies for navigating the healthcare system, individuals can better advocate for themselves and ensure they receive the proper care that they deserve. Learn more at https://lnkd.in/ec29HSKZ #rare360 #rareadvocacy #livingrare #rarediseases #gaslighting #gaslightingawareness #medicalPTSD For rare disease news, visit www.rare360.life

Discover the real impact of copay accumulators on patients with bleeding disorders. In a WTAE-TV feature, Bill Robie from NBDF explains how these programs affect people like Maria Shoemaker, who faces high costs to manage von Willebrand disease. Learn more about the challenges and who truly benefits from these policies. https://lnkd.in/gA8FQdXv #Healthcare #BleedingDisorders #CopayAccumulators #PatientAdvocacy #NBDF

For #scleroderma patients, the uncertainty can be overwhelming, especially when neither patient nor doctor are familiar with the disease... 🔐 Raising awareness is key, and enables patients and healthcare providers to recognise symptoms early - leading to better #treatment and a higher quality of life. ❓So, how do we spread the word? Educate yourself and others about scleroderma, share accurate information and participate in discussions in your community. Let's bridge the knowledge gap and create a more informed and compassionate environment for those affected by #ChronicDisease. ✨ #SclerodermaAwareness #ChronicIllness #PatientSupport

At SMS Clinical Research, we're conducting a study to explore new treatment options for COVID-19. If you or a loved one, aged 12-64 and otherwise healthy, is diagnosed with COVID-19, you may qualify to participate and earn $900+. Your involvement can help advance our understanding and treatment of this contagious disease. Enroll now and contribute to the fight against COVID-19. #COVID19 #FightCOVID #HealthcareInnovation #BeAPartOfTheSolution #Mesquite #SMSClinicalResearch #HealthyLiving #ClinicalTrial #PatientCare #MedicalResearch #ClinicalTrials #Covid19 #HealthScience #ClinicalStudy #ResearchTrial #PatientCare #HealthCare #Treatment #Eczema

Patient access programs thrive when they are supported by actionable data and the right technology. Learn how UBC’s success for rare disease patients is evolving and impacting patients: https://hubs.li/Q02zmC5z0 #PatientsFirst #PatientAccess #PatientSupport #RareDisease

May is #NationalHighBloodPressureEducationMonth! Heart disease is still the leading cause of death in the United States. As it accounts for hundreds of billions in healthcare costs in the United States annually, education and proper management of this condition are important for employee health—and your bottom line. Partnering with a digital solution for cardiometabolic conditions can give employees diagnosed with #highbloodpressure or #Type2diabetes the support they need. Our licensed clinicians and expert panel of health coaches allow for management of the condition rather than simple monitoring. Learn more here: https://lnkd.in/dbic7cq

Mathieu Loiseau, Director of Rare Clinical Services discusses the challenges faced by those living with rare diseases. Individuals living with a rare disease often find themselves navigating years of hospital appointments before receiving a diagnosis. They have limited treatment options and a lack of knowledge among healthcare professionals. This creates a profound sense of isolation for those already battling with the complexities of their health. Download our guide to explore the potential integration of clinical studies with patient support program 👉 https://lnkd.in/dh43Munn #RareDiseases #RareDisease #OrphanDrugs #PatientSupportProgram

The benefits of Remote Patient Monitoring for patients: - Improves accessibility to healthcare - Allows for improved chronic disease management - Decreases number of trips to clinics - Allows for better control over health - Saves money and time - Ensures proper education regarding health conditions Learn more about RPM by visiting https://lnkd.in/g8_GTq4W. #KencorCares #RemotePatientMonitoring #Telehealth #RemotePatientManagement