UCB’s Post

At industry events like #SCOPEsummit or in #pharma focus groups, we often hear from "real" #patients sharing their experiences with conditions, treatments, and daily lives. But how accurately do these stories reflect the broader patient population? Are these individuals on stage or in groups truly representative, or do they represent only a small subset? This February at CHI's Summit for Clinical Ops Executives (SCOPE), a panel of experts from prominent patient advocacy groups and representative organizations will shed light on the reality of living with various illnesses, including rare and chronic diseases. They will discuss the challenges patients face, unmet needs, treatment progressions, the nuances of clinical trials, and more. Join us to gain insights into the true experiences and obstacles encountered by patients on their healthcare journeys. https://lnkd.in/gHFBqCh2 T Hephner, Otis Johnson, PhD, MPA, Brett Kleger, Emily McCormack, Fabian Sandoval, MD, Quynh Tu Tran, MPH, Bridget Kotelly, Erik Yorke, Moe Alsumidaie, Inspire, Emerson Clinical Research Institute, Cystic Fibrosis Foundation

Yesterday, I had the privilege to participate in a panel discussion at World Orphan Drug Congress USA on Innovative solutions for health systems financing. Rare Diseases pose unique challenges to healthcare systems due rarity of patients, difficulties to develop rare disease drugs for super small populations, with high level of innovation which drive to high prices. Supportive and predictable regulations, early Public Private Patient PAGs Payors partnerships could make the difference. We highlight initiatives such as MoCA process in Europe and the need for equity based tired pricing in order to progress on equitable access. Thanks to Alexandra Heumber Perry, James Chambers and Veronica Lopez Gousset, MPH for sharing their thoughts, and having a constructive discussion on such an important topic. #worldorphandrugcongressUSA

🔍 #DidYouKnow? Linking patient data across multiple sources is crucial for advancing rare disease research. CRIDs (Clinical Research IDs) provide a unique universal ID, simplifying collaboration for doctors, scientists, and patients. Plus, they prevent data duplication! Creating a CRID is easy: 1. Visit TheCRID.org 2. Make a unique identifier with 8 letters or numbers 3. Share with medical providers or research studies If you're part of Simons Searchlight, add your CRID in a few clicks: 1. Log in to your account at SimonsSearchlight.org 2. Go to "Account Settings" 3. Add your CRID in the designated field Thank you for contributing to rare disease research! Your CRID helps us work together and empower patients. For questions, email Coordinator@SimonsSearchlight.org. #RareDiseaseResearch #CRID #SimonsSearchlight

Over 700,000 people worldwide are living with Myasthenia Gravis (MG), a rare neuromuscular disease. In time for #MGAwarenessMonth, Huma is proud to introduce HumaMG, an innovative digital care platform designed specifically to help patients and their care teams monitor and manage the effects of MG. HumaMG makes it easy for patients to track their symptoms, receive timely reminders for their medication, and access educational resources tailored to their condition. Care teams can remotely monitor patient progress, identify potential issues early, and adjust treatments accordingly. We’re proud to be working with people living with MG, patient advocacy groups, and key opinion leaders in the MG space to continually enhance HumaMG, making it even more suited to the unique needs of MG patients and care teams. Together, we can make a meaningful difference in the lives of patients and their families. Myasthenia Gravis Foundation of America, Inc. #MGawareness #MyastheniaGravis #HumaMG #HealthTech

🔎 Why is clinical trial feasibility essential for rare disease trials? ✔️ Understand ethical & regulatory site needs. ✔️ Optimize patient recruitment & investigator selection. ✔️ Avoid delays and financial burdens. ✔️ Identify region-specific practices impacting timelines. Read more: https://lnkd.in/gEyHWStU Set your trials up for success with feasibility studies. 🌍 Need guidance? Credevo is here to help! #ClinicalTrials #ClinicalResearch #ClinicalTrialExecution #RareDiseases #ClinicalTrialsAPAC #ClinicalTrialsUSA #Credevo

🔍 #DidYouKnow? Linking patient data across multiple sources is crucial for advancing rare disease research. CRIDs (Clinical Research IDs) provide a unique universal ID, simplifying collaboration for doctors, scientists, and patients. Plus, they prevent data duplication! Creating a CRID is easy: 1. Visit TheCRID.org. 2. Make a unique identifier with 8 letters or numbers. 3. Share with medical providers or research studies. If you're part of Simons Searchlight, add your CRID in a few clicks: 1. Log in to your account at SimonsSearchlight.org. 2. Go to "Account Settings." 3. Add your CRID in the designated field. Thank you for contributing to rare disease research! Your CRID helps us work together and empower patients. For questions, email Coordinator@SimonsSearchlight.org. #RareDiseaseResearch #CRID #SimonsSearchlight

Participate in a nontuberculous mycobacteria clinical trial and make an impact in the community. Enroll now: https://lnkd.in/ggS2FVq5 #ntmlungdisease #nontuberculousmycobacteria #lungdisease #ClinicalTrials #PatienTrials

We are looking for patients with Hemophilia condition. Visit the link below if you are interested to partake in our clinical trial! https://lnkd.in/g_MzQGZx #findaclinicaltrial #clinicalresearchmy #Hemophilia

Participate in a nontuberculous mycobacteria clinical trial and make an impact in the community. Enroll now. https://lnkd.in/ggS2FVq5 #ntmlungdisease #nontuberculousmycobacteria #lungdisease #ClinicalTrials #PatienTrials

Unfortunately recent data indicate a troubling resurgence of syphilis. Please see our full syphilis guidelines and find more on diagnostic approaches - https://lnkd.in/dSXjg3mW #Syphilis #ClinicalCare #HealthcareProfessionals