EURO-NMD European Reference Network for Rare Neuromuscular Diseases’ Post

Today is Rare Disease Day! A special day to raise awareness around the world, improve access to treatment and support patients and families 💜 What are rare diseases? All of those that affect less than 1 in 2000 people, it is estimated that 300 million people live with a rare disease worldwide 🌎 The principal challenges for patients living with rare diseases are the lack of information, which leads to a delay in the diagnosis, and the limited access to treatment and care How can we help? Get involved in Rare Disease Day activities, spread the word, and share knowledge 💚 Unite for change! Unite for equity! #RareDiseaseDay #LightUpForRare

🌏 Today marks Rare Disease Day, a global observance focused on raising awareness for rare diseases and their impact on patients' lives. This day is a call to recognize the challenges faced by those living with these conditions and to emphasize the importance of research and development in this field. 🌍 Rare Disease Day brings to light a crucial understanding: although we may not all be directly affected by rare diseases, each of us can be an integral part of a broader effort. This day serves as a call to action for everyone to engage in raising awareness and understanding, supporting research, and showing solidarity with those facing these challenges. Our collective efforts, empathy, and commitment can make a significant impact in the lives of those living with rare diseases, creating a more inclusive and supportive environment for them. www.rarediseaseday.org #RareDiseaseDay #HopeThroughInnovation https://lnkd.in/dcxc2FVY

Join Us for Rare Disease Day! Today, February 29th, is Rare Disease Day, a time to spotlight the millions affected worldwide. Did you know that there are over 6,000 rare diseases identified, impacting around 400 million people globally? Let's unite to raise awareness, support research, and advocate for change. In the face of challenges like misdiagnosis and limited treatment options, our solidarity is more important than ever. By spreading awareness, educating ourselves, and showing our support, we can make a real difference. Looking forward, there's hope on the horizon. Advances in research hold promise for better treatments and improved quality of life for those living with rare diseases. By coming together, we can amplify our voices and push for progress. Together, we can make a difference. #RareDiseaseDay #ShowYourRare #UnitedForRareDiseases #RealStaffing #RealLifeSciences

Demystifying autoimmune diseases! Explore what they are, how they affect the body, and strategies for managing these complex conditions. Knowledge is empowerment! 💡💪 Schedule a free screening today! 🔗 https://lnkd.in/dgjjirqg #autoimmunedisease #Q&A #SynergyHealthcare #autoimmune #immunesystem

This study describes the impact of autoimmune blistering disease on skin-related quality of life, stratified by patient-reported flare and assess the construct validity of the Skindex-16 score in this population. https://ja.ma/46euKD7

Today is #RareDiseaseDay. A day to raise awareness of the need to develop new therapies for people living with rare diseases around the globe. A day to focus on improving healthcare for people with rare diseases. To bring together everyone for research and innovation for rare diseases. Everyone matters! Rare, but not alone. 💚💜💙🩵 #rarediseaseday2024

In our latest Turning the Tide for Rare Diseases feature, Kelly Berger and Avery Roberts share how they're both affected by #CongenitalMuscularDystrophy. Together they hope to spread positivity, showing others how their ultra-rare diagnosis doesn’t hinder their aspirations in life. Read the full article at https://bit.ly/3SCY8Pi

🌟 Today is World Rare Disease Day, a global movement to recognise and raise awareness for the 300 million people worldwide who are living with a rare disease, along with their families and caregivers. 🔬 Bone Marrow Failure Syndromes are rare diseases, with 160 people newly diagnosed in Australia each year. Patients and their families often experience isolation and significant challenges as they try to navigate these devastating conditions. 🔗 Maddie’s Vision is proud to work with patients and families to ensure that their experiences and voices are integrated in all aspects of what we do. By sharing their stories and perspectives, we hope to raise awareness of how rare diseases impact their lives: https://lnkd.in/gNS-afhf #RareDiseaseDay #RareDiseaseAwareness #BoneMarrowFailureSyndromes #BoneMarrowFailure #AplasticAnaemia #MyelodysplasticSyndrome #SchwachmanDiamondSyndrome

For decades, J&J has been dedicated to meeting the unmet needs of people living with immune conditions, and more recently, of those living with autoantibody disease (AABs). When we look to innovate new therapies, we don’t consider just how common a condition is, we also recognise how severe the consequences are for someone impacted by it, and the extent of unmet need that exists. We’re dedicated to bringing insights that will help develop solutions that meet patients’ needs and deliver better outcomes. During MG awareness month I continue my discussion with Maria Raad and Ludovic de Beaucoudrey below, touching on the research and development we are doing and how we focus our efforts to address these significant challenges, continuing to contribute to improving the lives of people living with these rare diseases. #AutoAntibodies #MyastheniaAwareness #Healthcare #RareDisease

Today is #RareDiseaseDay – a moment to recognize and honor the 300+ million people around the world currently living with a rare disease, including amyloidosis, familial chylomicronemia syndrome (FCS) and hereditary angioedema (HAE).     Rare diseases can be difficult to diagnose, and day-to-day management can be complicated. Together with the rare disease community, we aim to increase awareness and understanding of the significant impact these conditions can have on patients, their families and care partners. Learn more about some of the people who inspire our work, and how we’re working to enable better futures for people living with rare diseases: https://lnkd.in/eFZMU3pE