Patient-Centered Outcomes Research Institute (PCORI)’s Post

I’m so honored to be invited to the 2nd southeast Asia Rare disease summit 2024. Rare disease is not rare as it sounds. In fact, there is a gap of evidence representing the real situation of our healthcare system. Is it would be great if the suffering patients could access to the equitable diagnosis and effective treatment within time? Another thing I would like to mention is, Strengthening the rare disease collaboration will promote the overall healthcare security. Not leaving any patients behind is the greatest thing of the healthcare system responsibility. Thanks for the organization, all professors and the patient association who are working on this movement. #rarediseases #healthtechnologyassessment

"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

Help make NOISE for #spasticparaplegia. A rare disease group needs every member to help grow awareness. The 2024 SPF #HSPandPLS Annual Conference brings together patients, physicians, and researchers to really see YOU! Come share your story with others June 21-23, 2024! #hspandpls #spasticparaplegiafoundation #awarenesshspandpls #releasecures #curehspandpls #disabilityawareness #patientadvocate #patienteducation #findacure

Actions and steps taken now at both global and local levels will pave the way towards global implementation of shared decision-making in #heartvalve disease. In consultation with 19 multidisciplinary experts, we identified five key areas for global action and six local calls to action. Learn more about local call to action 1: Develop comprehensive and accessible local-level patient information materials on shared decision-making in HVD - https://lnkd.in/d9iSYrrw #HeartSDM

Discover how patient registries are revolutionising rare disease research in Lifebit's latest blog. Learn about the four key benefits driving progress in this critical area of healthcare: https://bit.ly/3I94BeG #RareDisease #PatientRegistries #HealthcareSolutions #Lifebit

A new screen before/after design of the hospital management system on Behance. As a side effect of working on this system, I also learned a bunch of new words in English—discharge, epidemic, diagnosis, contagious disease, and so on. And on top of that, I learned a lot about the Canadian healthcare system. The Israeli one is still hard to understand, though. I think no one really understands the Israeli system ) #scrabchart

Given the complexity of DR management and ongoing debates on the exact mechanisms of glycemic control on disease progression, physicians should adopt a comprehensive approach to DR management. Read more in our current issue: https://lnkd.in/e9QN_5jQ #diabetes #retinaldisease

"#Predictiveanalytics empowers healthcare by analyzing data to forecast trends, enhance clinical decisions, and improve operational efficiency, ultimately leading to better patient outcomes and disease management." Read More: https://lnkd.in/dpE_xig9 #PredictiveAnalytics #Healthcare #DataDriven #PatientOutcomes #HealthTech

Inflammation is a silent killer. Our Co-Founder and Chief Clinical Officer, Jackie Iversen RPh MS, believes that today’s healthcare system treats inflammation too late, leading to disease progression and ultimately death. The advances that need to happen in the healthcare arena regarding inflammation are significant and we are marching forward with some powerful developments. We'd like to discuss this in greater detail during our webinar this Thursday at 1 pm EST. Won't you please join us? You can register for this event here: https://bit.ly/3WIUVjO #senjampharma #goodkarmapharma #webinar