National Organization for Rare Disorders’ Post

🩸Make a mark on the future of PNH research by enrolling in the Global PNH Patient Registry! Participation can be done at your own pace and is open to anyone with a paroxysmal nocturnal hemoglobinuria (PNH) diagnosis. https://pnh.iamrare.org/ #PNH

🩸Make a mark on the future of PNH research by enrolling in the Global PNH Patient Registry! Participation can be done at your own pace and is open to anyone with a paroxysmal nocturnal hemoglobinuria (PNH) diagnosis. https://pnh.iamrare.org/ #PNH

🩸Make a mark on the future of PNH research by enrolling in the Global PNH Patient Registry! Participation can be done at your own pace and is open to anyone with a paroxysmal nocturnal hemoglobinuria (PNH) diagnosis. https://pnh.iamrare.org/ #PNH

The proportion of patients diagnosed with early invasive #CRC has been vastly increasing. Challenges can arise in the clinical management of this patient group. Here are key points of therapeutic decision-making in early invasive T1 #CRC. 👉 This is your place for opportunities #myUEGcommunity #UEGEdu and #IngestTheBest! 🔗 The #onlinecourse link can be found here: https://bit.ly/49HTyoe

We sit down with Kim Moran, SVP & Head of U.S. Rare Diseases at UCB, to discuss the vital role of patient collaboration in driving innovation for the care and support of Myasthenia Gravis (MG) patients. Inspired by patients and driven by science, UCB is dedicated to exploring the patient journey to uncover uncertainties and develop new advancements for MG patients. Watch the full story on TheBalancingAct.com/rare #BehindTheMystery #MyastheniaGravis #MyastheniaGravisAwareness #MGAwareness #RareDisease #UCB #RareDiseaseAwareness

Rare diseases affect millions worldwide, yet clinical trials are often hindered with finding eligible patients and demonstrating value to stakeholders. Optimize your evidence generation strategy with modern approaches in patient recruitment and study design. Download our white paper to learn more: https://hubs.li/Q02k9vhB0 #PatientsFirst #RWE #RealWorldEvidence #RareDisease #RareDiseaseStudy #RWD

Diagnostics and labs play a pivotal role in modern healthcare, serving as the backbone for accurate medical evaluations, disease detection, and patient care. These facilities employ advanced technologies and methodologies to analyze samples ranging from blood and tissue to genetic material, providing invaluable insights into an individual's health status. Book your slot now: 9182797228 Visit: www.qpathdiagnostics.com #DiagnosticExcellence #LabTestingPrecision #MedicalDiagnostics #HealthcareInsights #AccurateLabResults #PatientCareFirst #DiagnosticsInnovation #LabTechAdvancements #HealthScreeningEssentials #MedicalLabInsights #PrecisionDiagnosis #ClinicalTesting #LaboratoryExpertise #HealthcareAccuracy #DiagnosticsAndLabs #PatientWellnessFirst #MedicalTestingSolutions #LabQualityMatters #HealthcareSafety #DiagnosticServices #LabEfficiency #MedicalResearch #HealthTechInnovations #LabProfessionals #DiagnosticCare #HealthScreeningAdvancements #LabServicesExpertise #MedicalInsightsNow #HealthcareTrust

"I'm interested in joining clinical trials, but I'm not a late stage patient, am I still eligible?" 🤔 Our Consultant Haematologist 🩸Dr. Tengku, summarizes the different stages of clinical trials 📋 and how patients may be eligible for them 👩🏻💻 *Mark your calendar - the CRD team will be at Level 3, Beacon Hospital this coming Monday, 20 May 2024, to share more information regarding clinical trials. See you there! 👩🏻🔬🔬🧪 #clinicaltrials #internationalclinicaltrialsday #clinicaltrialsday2024 #clinicaltrialsMalaysia

We sit down with Kim Moran, SVP & Head of U.S. Rare Diseases at UCB, to discuss the vital role of patient collaboration in driving innovation for the care and support of Myasthenia Gravis (MG) patients. Inspired by patients and driven by science, UCB is dedicated to exploring the patient journey to uncover uncertainties and develop new advancements for MG patients. Watch the full story on TheBalancingAct.com/rare #BehindTheMystery #MyastheniaGravis #MyastheniaGravisAwareness #MGAwareness #RareDisease #UCB #RareDiseaseAwareness

Struggling to reach rare disease patients or collect real-world data for your orphan drug? Integrating patient support programs (PSPs) into your research is a game-changer. The challenge: ◾ Scarce & inaccessible clinical trials ◾ Limited real-world data from traditional studies ◾ Burden on patients to participate and adhere PSPs are your bridge: ◾ Enhanced patient access in their own communities ◾ Improved data quality reflecting everyday experiences ◾ Boosted patient adherence leading to more reliable results ◾ Holistic care beyond research, improving quality of life Read more here: https://lnkd.in/g4qjda46 Let's bridge the gap together. #clinicaltrials #patientsupport #realworlddata #RWE #rarediseases