Bristol Myers Squibb’s Post

19th June every year is officially designed as *World Sickle Cell Day.* The day is observed globally to increase public knowledge and awareness of sickle cell disease and challenges experienced by the patients and their families and caregivers. Other objectives of the day include: * Advocacy on how to develop health programs on the management of SCD. * Raise awareness on the necessity of premarital screening. * Device means to promote research on how to better the lives of people living with SCD. Sickle Cell Disease affects millions. It is Hereditary, not Contagious. There is no known Cure. It can be Avoided. Person with Sickle cell trait can live a normal life.

As October draws to a close, we wrap up Health Literacy Month and Breast Cancer Awareness Month. It's a great time to reflect on the importance of staying informed and educated about our health. Health literacy is crucial for making informed decisions about our health and well-being. It enables us to comprehend health information, navigate the healthcare system, and communicate effectively with healthcare professionals. Breast Cancer Awareness Month serves as a powerful reminder of the significance of early detection and prevention. Let's keep prioritizing our health and taking proactive measures to stay healthy! https://kalemd.com/ #healthliteracy #breastcancerawareness #healthylifestyle #earlydetection #prevention #functionalmedicine #health

Rare diseases aren't actually all that rare?! Paediatric Endocrinologist Tony Hulse stopped by today to share his insights on challenges in diagnosis and management of rare diseases. Most of the team were shocked by some of the facts he shared with us around the long journey to diagnosis, and to find that rare diseases are not so rare, after all. He'll also be adding to his free lecture series on MedShr Learning. What would you most like to learn from him? #meded #medicaleducation #medschool #doctors #foamed #rarediseases #rarediseaseday

Around 25% of people living with IBD — which includes Crohn’s disease and ulcerative colitis — are diagnosed before they are 18 years old. To address their unique needs, the Crohn's and Colitis Young Adults Network produced a series of roundtables focused on Young Adults with Inflammatory Bowel Disease (IBD). The roundtables bring together key stakeholders in research, medicine, and affected populations aimed at improving quality of life and outcomes for young adults with IBD. This #MentalHealthAwarenessMonth, we are highlighting CCYAN’s work on trauma-informed care for individuals living with IBD. In this roundtable, medical professionals and young adults with IBD discuss challenges experienced by patients, including prolonged pain and disease unpredictability that can disrupt daily life, and how clinicians can build trust with their patients. Learn more about these Helmsley-supported roundtables here: https://lnkd.in/eiSHY4N3 #IBDAwareness #CrohnsDisease #UlcerativeColitis #IBD

Why has the zebra become a symbol of rare diseases? 🦓 Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, rare diagnosis. People with rare and chronic diseases spend years searching for answers. Because of this metaphor, the zebra has been adopted as a symbol by many rare disease advocacy groups and organizations. It represents the idea that while rare diseases may be uncommon, they still exist and need attention, research, and support. The zebra serves as a reminder to healthcare professionals to keep rare diseases in mind when diagnosing patients and to encourage greater awareness and understanding of these conditions. 📷: The Ehlers-Danlos Society #EhlersDanlosSyndromes #PatientAdvocacy #RareDiseases

At Astellas, we put patients at the heart of everything we do, which is why we value partnering with patient organizations.   We recently sat down with representatives from Macular Society, International Agency for the Prevention of Blindness (IAPB), Foundation Fighting Blindness, Asociación Mácula Retina and Comitato Macula to discuss the key challenges and unmet needs of patients with retinal diseases. Together we talked through how we can best support and positively impact the patient community.   Learn more about how Astellas prioritizes patients: https://lnkd.in/demKqdT4   #PatientAdvocacy #EyeHealth 

🔬 CLA Awareness Day: A Call to Medical Professionals 🔬 Today marks CLA Awareness Day, dedicated to increasing understanding and enhancing diagnosis of Complex Lymphatic Anomalies—a group of rare diseases affecting the lymphatic system, encompassing Gorham Stout Disease, Generalized Lymphatic Anomaly, Central Conducting Lymphatic Anomaly, and Kaposiform Lymphangiomatosis. As healthcare providers, your role in early recognition and treatment of these conditions is crucial. These anomalies can be challenging due to their progressive nature and potential to affect both soft tissue and bones. Awareness and continued education can lead to improved outcomes for patients worldwide. 📚 For more in-depth information and to join the conversation on advancing care for CLA patients, visit bit.ly/CLAawareness. Let's harness our collective expertise to foster better patient journeys and push the boundaries of what's possible in lymphatic disease management. #CLAawarenessDay #MedicalResearch #HealthcareInnovation #LymphaticHealth #CLAawarenessDay #LymphaticHealth #RareDiseaseAwareness #ComplexLymphaticAnomalies

TREAT-NMD are proud to be collaborating with 8 other outstanding organisations on The Patient Lifestyle and Disease Data Interactium (PaLaDIn). The PaLaDIn team brings together academics, SMEs and patient organisations from five countries whose partnership allows key stakeholders to share and apply expertise in neuromuscular diseases, patient advocacy and data science. TREAT-NMD recognises the powerful partnership and unique opportunity that the PaLaDIn project provides the neuromuscular community: “We at TREAT-NMD provide a global network of experts in neuromuscular diseases. The strength and expertise of our network, and all nine global partners working together to deliver the PaLaDIn project, means that we can collaborate to transform the NMD field. “The mission of this consortium of partners is to create a data platform that will help to pioneer effective treatments, delivering the best care for those living with NMD and other rare diseases across the world. “One of the biggest challenges we face in our field is the lack of patient data. PaLaDIn is designed to tackle exactly that challenge, working with patients, healthcare professionals and researchers to collate impactful data that can make a big difference in rare disease diagnosis and treatment.” - David Allison, CEO of TREAT-NMD Services Ltd https://lnkd.in/eGynBBQB #PaladInEU #neuromuscular #NMDs #FSHD #Duchenne #researchinnovation #healthinnovation Aparito Parent Project aps Duchenne UK Leiden University FSHD Society Amsterdam UMC Ludwig-Maximilians-Universität München John Walton Muscular Dystrophy Research Centre @ Newcastle University

Rare diseases affect 300 million people worldwide so it’s no surprise that 50% of Clinigen's Managed Access Programs (MAPs) are focused on treatments for rare conditions. Shockingly, it can take five to thirty years to get a diagnosis, and when they finally receive one, patients often struggle to cut through the complex healthcare industry to find a way forward.   Clinigen has supported rare disease patients and patient advocacy groups for over 35 years and our depth of expertise is unmatched. That’s why we’ve created NaviGATE, a unique initiative aimed at equipping the rare disease community with the tools they need to engage with healthcare providers, industry and regulatory bodies.   As a first step, we’re asking the community to help us shape an educational resource that when live, will support greater participation in rare disease research and enable increased access to medicines for more patients through managed and early access programmes. If you are part of the rare community or know someone who is, please get involved and complete our survey: navigateresearch.co.uk. #rarediseases #patientadvocacy

National Lipid Pathway Guidance 🖥️ Interactive, user-friendly version of NICE-supported NHS guidance. ❤️ Targets lipid management for CVD prevention. 🩺 Features enhancements to aid clinicians. https://lnkd.in/eu5PZHSQ