Myhre Syndrome Foundation’s Post

Sebia joins the International Myeloma Foundation for #𝗕𝗹𝗼𝗼𝗱𝗖𝗮𝗻𝗰𝗲𝗿𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀𝗠𝗼𝗻𝘁𝗵. Don’t miss our #webinar on September 18th where Dr. Joseph Mikhael, MD and Dr. Christopher Farnsworth, PhD will be live and speaking on Comorbidities and Health Disparities as it relates to the Diagnosis of #MultipleMyeloma. Please join us! Click below to register! 𝗧𝗶𝗺𝗲𝗹𝘆 𝗗𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀 𝗼𝗳 𝗠𝘆𝗲𝗹𝗼𝗺𝗮 𝗶𝗻 𝗣𝗼𝗽𝘂𝗹𝗮𝘁𝗶𝗼𝗻𝘀 𝘄𝗶𝘁𝗵 𝗖𝗼𝗺𝗼𝗿𝗯𝗶𝗱𝗶𝘁𝗶𝗲𝘀 𝗮𝗻𝗱 𝗛𝗲𝗮𝗹𝘁𝗵 𝗗𝗶𝘀𝗽𝗮𝗿𝗶𝘁𝗶𝗲𝘀: 𝗧𝗲𝘀𝘁𝗶𝗻𝗴 𝗖𝗼𝗻𝘀𝗶𝗱𝗲𝗿𝗮𝘁𝗶𝗼𝗻𝘀 📆 September 18, 2024 🕛 6:00pm CEST ➡️ https://lnkd.in/eUG7FQ_i #Sebia #KNOWMYELOMA #MyelomaAwareness #CancerAwareness #Healthcare #SupportPatients #Freelightchain #FLC #diagnosis #patientcare #SebiaRomania

📢 New Publication Alert! We’re excited to announce our latest study: "Cost effectiveness of empagliflozin in adult patients with chronic kidney disease in the Netherlands" 💡 Key Findings: The research shows that adding empagliflozin to standard care for chronic kidney disease (CKD) patients is a cost-saving strategy: Saves €34,380 per patient over their lifetime compared to standard care alone, provides an additional 1.31 life years and additional 1.22 quality-adjusted life years (QALYs). 📊 Methodology: Using data from the EMPA-KIDNEY trial and a microsimulation model, CKD progression, costs, and health outcomes in the Dutch healthcare context were analyzed. 🏥 Conclusion: Empagliflozin offers significant health and economic benefits for CKD patients—regardless of diabetes status or albuminuria levels. 📖 Read the full article by Bart Slob, Tanja Fens, PhD, Maaike Weersma, Maarten Postma, Cornelis Boersma and Lisa de Jong in PLOS ONE: https://lnkd.in/ekBxQ6_M. Let’s advance CKD care together! Health-Ecore Team #CKD #Empagliflozin #HealthEconomics #PLoSONE #ChronicKidneyDisease #CostEffectiveness

Sebia joins the International Myeloma Foundation for #𝗕𝗹𝗼𝗼𝗱𝗖𝗮𝗻𝗰𝗲𝗿𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀𝗠𝗼𝗻𝘁𝗵. Throughout the month of September, one simple question will be asked: “𝗗𝗼 𝗬𝗼𝘂 𝗞𝗻𝗼𝘄 𝗠𝘆𝗲𝗹𝗼𝗺𝗮?" Don’t miss our #webinar on September 18th where Dr. Joseph Mikhael, MD and Dr. Christopher Farnsworth, PhD will be live and speaking on Comorbidities and Health Disparities as it relates to the Diagnosis of #MultipleMyeloma. Please join us! Click below to register! 𝗧𝗶𝗺𝗲𝗹𝘆 𝗗𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀 𝗼𝗳 𝗠𝘆𝗲𝗹𝗼𝗺𝗮 𝗶𝗻 𝗣𝗼𝗽𝘂𝗹𝗮𝘁𝗶𝗼𝗻𝘀 𝘄𝗶𝘁𝗵 𝗖𝗼𝗺𝗼𝗿𝗯𝗶𝗱𝗶𝘁𝗶𝗲𝘀 𝗮𝗻𝗱 𝗛𝗲𝗮𝗹𝘁𝗵 𝗗𝗶𝘀𝗽𝗮𝗿𝗶𝘁𝗶𝗲𝘀: 𝗧𝗲𝘀𝘁𝗶𝗻𝗴 𝗖𝗼𝗻𝘀𝗶𝗱𝗲𝗿𝗮𝘁𝗶𝗼𝗻𝘀 📆 September 18, 2024 🕛 6:00pm CEST ➡️ https://lnkd.in/enSAjjTV #KNOWMYELOMA #MyelomaAwareness #CancerAwareness #Healthcare #SupportPatients #Freelightchain #FLC #diagnosis #patientcare

🌟 New Collaboration Announcement! We are proud to share that ClinicalTrials.eu is now linked on the Agora Platform website, a premier hub for information on rheumatic and musculoskeletal diseases. This partnership enables us to connect with a broader community and provide essential resources for patients seeking new treatment options. Through our presence on Agora Platform, we provide: 🔹 Detailed information on a wide range of diseases 🔹 Listings of current clinical trials 🔹 Support and educational resources for patients and their families Check out the Agora Platform to learn more about our collaborative efforts to advance health research and improve patient outcomes. 👉 https://lnkd.in/dYpCSjrX 👈 Let's work together to support better health! 🌟 #RheumaticDiseases #MusculoskeletalDiseases #ClinicalTrials #PatientCare #MedicalResearch #AgoraPlatform #ClinicalTrialsEU Łukasz Więch, MD, MBA | Łukasz Izbicki, PharmD, PhD | Andri Phoka | Boryana Boteva

It may not be Rare Disease Day, but 30 million Americans living with one of 7,000+ rare conditions are impacted every day. Less than 5% have treatment options. Prognos Health's data sets offers a solution to accelerate change: - Identify high-potential targets and precise patient cohorts - Target HCPs serving rare disease patients to ensure therapy awareness - Demonstrate real-world value to support more successful commercial launches Time is precious for patients with rare diseases. Contact us today to discover how Prognos Health's unique, harmonized, and enriched lab data sets can make a difference: https://bit.ly/3yDm5yG #rwd #raredisease #HCPengagement #PrognosHealth #unlocklabdata

Sebia joins the International Myeloma Foundation for #𝗕𝗹𝗼𝗼𝗱𝗖𝗮𝗻𝗰𝗲𝗿𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀𝗠𝗼𝗻𝘁𝗵. Throughout the month of September, one simple question will be asked: “𝗗𝗼 𝗬𝗼𝘂 𝗞𝗻𝗼𝘄 𝗠𝘆𝗲𝗹𝗼𝗺𝗮?" Don’t miss our webinar on September 18th where Dr. Joseph Mikhael, MD and Dr. Christopher Farnsworth, PhD will be live and speaking on Comorbidities and Health Disparities as it relates to the Diagnosis of #MultipleMyeloma. Please join us! Click below to register! 𝗧𝗶𝗺𝗲𝗹𝘆 𝗗𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀 𝗼𝗳 𝗠𝘆𝗲𝗹𝗼𝗺𝗮 𝗶𝗻 𝗣𝗼𝗽𝘂𝗹𝗮𝘁𝗶𝗼𝗻𝘀 𝘄𝗶𝘁𝗵 𝗖𝗼𝗺𝗼𝗿𝗯𝗶𝗱𝗶𝘁𝗶𝗲𝘀 𝗮𝗻𝗱 𝗛𝗲𝗮𝗹𝘁𝗵 𝗗𝗶𝘀𝗽𝗮𝗿𝗶𝘁𝗶𝗲𝘀: 𝗧𝗲𝘀𝘁𝗶𝗻𝗴 𝗖𝗼𝗻𝘀𝗶𝗱𝗲𝗿𝗮𝘁𝗶𝗼𝗻𝘀 📆 September 18, 2024 🕛 6:00pm CEST ➡️ https://lnkd.in/enFTar5W #KNOWMYELOMA #MyelomaAwareness #CancerAwareness #Healthcare #SupportPatients #Freelightchain #FLC #diagnosis #patientcare

𝐖𝐨𝐫𝐥𝐝 𝐎𝐬𝐭𝐞𝐨𝐩𝐨𝐫𝐨𝐬𝐢𝐬 𝐃𝐚𝐲: 𝐑𝐚𝐢𝐬𝐢𝐧𝐠 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐟𝐨𝐫 𝐁𝐨𝐧𝐞 𝐇𝐞𝐚𝐥𝐭𝐡 Let us join the global movement dedicated to raising awareness about the prevention, diagnosis, and treatment of osteoporosis and related musculoskeletal diseases. Osteoporosis often goes underdiagnosed and undertreated, yet it poses a significant risk to individuals worldwide. Currently, one in three women and one in five men aged 50 and over will experience a fragility fracture due to osteoporosis in their lifetime. This highlights the urgent need to prioritize bone health and fracture prevention on the global health agenda. This day serves as a call to action, reaching out to healthcare professionals, policymakers, the media, patients, and the public to unite in spreading knowledge and understanding of this silent disease. At Turacoz Group , we are committed to participating in this vital awareness campaign. Together, we can make a difference in the lives of those at risk. #WorldOsteoporosisDay #BoneHealth #FracturePrevention #HealthcareAwareness #Turacoz

🕒 **Discover the Latest Insights on Diagnostic Delays in Rare Diseases!** 🕒 I'm excited to share a must-read paper titled "Time to diagnosis and determinants of diagnostic delays of people living with a rare disease: results of a Rare Barometer retrospective patient survey." This comprehensive survey, conducted by EURORDIS-Rare Diseases Europe, reveals the significant challenges and lengthy delays patients face in getting an accurate diagnosis. Understanding these delays is crucial for improving early diagnosis and ensuring better patient outcomes. The paper offers valuable data and insights that can drive meaningful changes in healthcare policies and practices. 👉 Read the full paper in the link you will find in the first comment of this post. Let's work together to raise awareness and support timely diagnosis for those living with rare diseases. Share this with your network to spread the knowledge and make a difference! #RareDiseases #Healthcare #Health #PatientAdvocacy #Research #EURORDIS #ERCAL #FECOER

Rare Disease Day 2024: A deep dive into 15 key questions that atypical HUS patients & family caregivers would like researchers & clinicians to prioritize. https://lnkd.in/eRG__V3y An in-depth exploration of the aHUS Patients’ Global Research Agenda #PatientExperience #raredisease #aHUS #RareDiseaseDay

Did you know a disease is considered rare when it affects fewer than 1 in 2,000 people? People living with rare diseases face many challenges, from limited research and treatment options to high financial burden of caregiving, among others.    With support from Roche, CHRI-PATH is supporting the government of India and AIIMS' Centers of Excellence(CoE) in implementing the National Policy for Rare Diseases 2021 and advocating for a national program with awareness campaigns, and strategic public-private partnerships. Our efforts also focus on strengthening Centers of Excellence and supporting rare disease research. The last day of February is marked as Rare Diseases Day, an effort to unite and raise awareness and advocate for equitable access to diagnosis, treatment, health, and social care for those affected by rare diseases. 🤝  👇Share the video to raise awareness and make a difference.   **Clarification: The video states that 40 million patients are living with rare diseases worldwide; the correct statistic is 400 million patients. #RareDiseasesDay2024 #HealthForAll Rare Disease Day AIIMS (All India Institute of Medical Sciences, New Delhi) Ministry of Health and Family Welfare, Government of India Centre For Health Research and Innovation (CHRI) a PATH affiliate PATH Dr. Swati Mahajan Rachana Parikh Dr. Sonali Bagla Dr Nikita Raula