EuCARE’s Post

In this insightful blog, IQVIA’s Rajanya Roy, Rohit Bansal, David Tegay, D.O., FACMG, FACOI, and Sara Benolkin discuss how the combined sum of rare diseases makes them a pressing public health priority, and how IQVIA helps its customers to advance treatment of rare diseases. Read now. https://bit.ly/4bFYQmn #raredisease

#Raredisease remains a global health concern, especially for under-served communities in low- and middle-income countries. The Undiagnosed Diseases Network International (UDNI) was established in 2015 to improve rare disease diagnosis and translation of research into clinical practice. In 2021, the UDNI launched the Diagnostic Working Group (#UDNI DWG) to accelerate diagnoses, support Undiagnosed Diseases Programs in resource-limited areas, and advance global medical knowledge through research and collaboration. This collaborative effort aims to enhance diagnostic capabilities and outcomes for individuals with rare diseases worldwide. Full Breakdown: https://lnkd.in/gvRYV5jy

Did you know that this week (February 29th), the global community observes Rare Disease Day, raising awareness and advocating for the 300 million people worldwide living with rare diseases, along with their families and caregivers? PointClickCare Life Sciences' Role: Data Capture - Our proprietary EHR captures longitudinal patient data from over 70% of US-based Long-Term and Post-Acute Care Facilities. Rare Diseases - This dataset includes information on patients with various rare diseases over the last 36 months. Research Support - PointClickCare’s Life Sciences robust dataset can support research efforts and facilitate informed decision-making, ultimately leading to improved patient outcomes. To learn more about our initiatives and explore how our data can enhance rare disease treatments, you can connect with us here: https://lnkd.in/gwaR3JTz Let’s continue to raise awareness and drive positive change for those affected by rare diseases! 🌟🧬🤝 #RealWorldData #LongTermCare #HealthcareRevolution #PointClickCare #LifeSciencesByPointClickCare #RWD #RWE #DataStorytelling   #RareDiseaseDay #RareDiseaseDay2024 

We collaborate with patients, advocates and researchers to get more treatments for all people more quickly, including for #RareDiseases. With many research programs and activities that impact the rare diseases community, we’ve established ourselves as a leader in rare diseases research at the National Institutes of Health. Explore how we are addressing the significant and often unmet needs of those affected by rare diseases: https://go.nih.gov/njCpKfm

Causal inference in public health is about identifying and understanding the causal relationships between various factors and health outcomes in populations. It involves using statistical methods and research designs to determine the impact of specific interventions or exposures on public health outcomes. From epidemiological viewpoint, it is essential to boost community healthcare and diseases prevention. #DAG structure learning plays systematically essential role in identifying important risk factors.

Summary: The study by Laporta et al. aims to estimate the prevalence of chronic Chagas disease (CCD) in Brazilian municipalities from 2010–2022. Statistical modeling identified key predictors, with an estimated 3.25% prevalence in 3,778 municipalities, totaling ~3.7 million cases in Brazil. The study underscores the challenge of vertical transmission, urging inclusion in the national program for elimination. via Pan American Journal of Public Health https://ift.tt/8GrbaPx #healthpolicy, #healthsystems, #policy

Explore the latest insights on Liver Diseases from Mount Sinai. From new treatments to addressing disparities, this report covers it all. Check it out: https://bit.ly/49dxFgG #Healthcare #Research #LiverDiseases

Today is Rare Disease Day! A disease is rare when it affects fewer than 1 in 2,000 people. Rare Disease Day is a movement working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Those living with a rare disease face challenges, such as: 🧪 The lack of scientific knowledge and quality information on diseases often results in a delayed diagnosis 🩺 The need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care - often results in heavy social and financial burdens on patients 🔬 Research needs to be international to ensure that experts, researchers and clinicians are connected Watch their official video to learn more: https://lnkd.in/eaiPUcpa #RareDiseaseDay #RareDiseaseDay2024 #RareDisease

Today is Rare Disease Day!  A disease is rare when it affects fewer than 1 in 2,000 people. Rare Disease Day is a movement working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Those living with a rare disease face challenges, such as: 🧪 The lack of scientific knowledge and quality information on diseases often results in a delayed diagnosis 🩺 The need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care - often results in heavy social and financial burdens on patients 🔬 Research needs to be international to ensure that experts, researchers and clinicians are connected Watch their official video to learn more: https://lnkd.in/e76yAESx #RareDiseaseDay #RareDiseaseDay2024 #RareDisease

Today is Rare Disease Day! A disease is rare when it affects fewer than 1 in 2,000 people. Rare Disease Day is a movement working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Those living with a rare disease face challenges, such as: 🧪 The lack of scientific knowledge and quality information on diseases often results in a delayed diagnosis 🩺 The need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care - often results in heavy social and financial burdens on patients 🔬 Research needs to be international to ensure that experts, researchers and clinicians are connected Watch their official video to learn more: https://lnkd.in/ebKtw4T6 #RareDiseaseDay #RareDiseaseDay2024 #RareDisease