Cormedix Inc.’s Post

For people like Lynce, living with #MultipleMyeloma (MM) means navigating the challenges of a currently incurable disease. Despite the uncertainties, Lynce has found strength through her family, the power of self-advocacy and giving back to the MM community, including as a member of Pfizer’s Patient Steering Committee. Discover more about her path from diagnosis to working with her care team to get the most from life: https://lnkd.in/er4ydGwB

📣📣In recognition of Chronic Disease Awareness Month, we are thrilled to share a success story from a dedicated care team in Houston, Texas. 💪Despite being lean and mighty, Sweetwater Medical faced ongoing staffing challenges and a lack of resources. Like many practices, time constraints made monitoring their patients with chronic conditions even more challenging. 💡They knew there had to be a better way. ➡️Discover how AI-enabled RPM helped them streamline clinical workflows, reduce administrative burden and, most importantly, improve patient outcomes. Check out the full case study@ https://hubs.li/Q02DSBzm0

At Cure HHT, we work tirelessly each and every day to end the suffering from this disease... because we know it all too well. Marianne Clancy, our executive director for 20-plus years, recently shared her story with Medtronic. Sadly, it's a story that many patients can related to -- one of misdiagnosis, years with no answers, and preventable loss. It's also a story that highlights the importance of our mission to push for more awareness and better treatment. Together, we can end this. Watch here: https://lnkd.in/guU6cNT6

𝐌𝐚𝐲 𝐢𝐬 𝐀𝐋𝐒 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐌𝐨𝐧𝐭𝐡 | This month, we join hands with the ALS community—patients, families, researchers, and healthcare providers. Together, we aim to highlight the critical need for more research and improved care for those impacted. At Julius Clinical, our focus on ALS clinical trials underscores our commitment to finding life-changing treatments for patients. With the rising incidence of ALS, the need for effective treatments has never been more urgent. In each trial, we leverage our scientific expertise and operational insights. Julius Clinical is dedicated to advancing research and deepening the understanding of ALS. We are proud to be part of the global effort to combat ALS and invite everyone to learn more and support ALS research during this awareness month. Together, we can make a difference in the lives of those affected by this challenging disease. Learn more about the ALS Awareness month here, https://lnkd.in/gH5gvtmk Learn more about our efforts and how we can support your ALS clinical trial here, https://lnkd.in/etx-5hun

Today we celebrate Rare Disease Day, and our team wants you to know that you are visible to us every day. Rare STRIDES and Rare Wish are united in passion and vision to help rare children and adults. Rare diseases are defined as medical conditions that affect fewer than 200,000 people. Did you know that more than 30 million Americans live with a diagnosis of one of the over 7,000 recognized rare diseases? At Rare STRIDES our team was founded by many leaders and team members who are impacted by rare personally. They have made it their personal mission to help make a difference. After years of experiencing their own challenges in community and healthcare; and after meeting thousands of rare families, rare leaders, and medical team members, we understand many of the hardships and challenges from a personal and professional level, which ignites the passion and vision behind everything we do. At Rare STRIDES, we recognize rare every moment of every day and strive to make rare visible in healthcare. We are united with our community to help solve challenges and hardships that patients and families around the world face when they need diagnosis, treatment, and ongoing care for their rare diseases. We go much farther than simply building technology. When it is all said and done, we believe in building innovation that gives back to our rare community all year long! At Rare STRIDES, we LOVE our rare community, and it shows! #showyourstripes #rarediseaseday #makerarevisible #rarestrides #rarewish #rarediseaseawareness

The NECESSITY Project like to thank the invaluable contribution of our Patient Advisory Group (PAG) to the ongoing success of the project and their presence during this year's annual #GeneralAssembly. Their unique insights into Sjogren's disease have been indispensable. The PAG plays a pivotal role during the entirety of the project, providing a distinctive perspective that enhances our understanding of the challenges patients face. Their involvement ensures that our efforts in the NECESSITY project are patient-centric and aligned with real-world needs. Sjogren's disease is a complex condition, and the patient experience is crucial to our research. The PAG's active participation has enriched discussions, offering valuable perspectives on the impact of the disease on their lives. Their input goes beyond data; it's a human touch that shapes the direction of our project. The success of the NECESSITY project is not just about groundbreaking research; it's about creating meaningful outcomes for those affected by Sjogren's disease. A big shoutout to our Patient Advisory Group for their commitment, insights, and unwavering support. Together, we are making a difference in the lives of those living with Sjogren's disease! Thank you Coralie Bouillot and Maggy Pincemin for your continued support! 👏👥 #PatientEngagement #NECESSITYProject #SjogrensDisease #PatientPerspective #HealthcareInnovation

Rare disease patient groups have identified recruiting trustees as a crucial milestone for early-stage groups. If you learn best through video, are an early-stage patient group currently looking to recruit new trustees, plan to in the near future or are an established group who is looking to refresh their trustee board, this our first video Top Tip guide is for you! Learn 7 tips for recruiting trustees to your rare board with Getting On Board ✅ Enrol here: 👇 https://ow.ly/gZMV50QpAcZ

Did you know that over 37 million Americans are living with kidney disease, and 9 out of 10 are unaware they have it until it reaches an advanced stage? On top of that, the shortage of kidney transplants is causing longer wait time for patients to be paired with a new kidney. Dr. Rahul Prakash, Medical Director at DaVita, was featured on CW39 Houston to talk about early detection of kidney disease, waiting list resources, and how you can become a life-saving donor. Check it out: https://ow.ly/t02Q30sAJe4

Today, on #RareDiseaseDay, we unite in heart and spirit with the millions touched by rare diseases. As a father and proud caregiver of a brave child battling a rare disease, I've seen the battles and triumphs up close. Each person’s fight is unique, but our mission is shared: to drive innovation and wrap care around the #patient, not just the disease. Rare diseases affect over 300 million globally, each story is a beacon of hope. Let's amplify these voices, pushing the boundaries with medical innovation to transform patient outcomes. Today, let's pledge to make every rare voice heard, turning challenges into breakthroughs.Your courage inspires. Together, we're unstoppable. Let's make rare care, extraordinary care. #Innovation #PatientCentricCare #rarediseases #TogetherWeAreUnstoppable

Did you know that over 37 million Americans are living with kidney disease, and 9 out of 10 are unaware they have it until it reaches an advanced stage? On top of that, the shortage of kidney transplants is causing longer wait time for patients to be paired with a new kidney. Dr. Rahul Prakash, Medical Director at DaVita, was featured on CW39 Houston to talk about early detection of kidney disease, waiting list resources, and how you can become a life-saving donor. Check it out: https://ow.ly/MNny30sAoq4