Global Genes’ Post

Rare Disease Day 2024 is just a few days away. Rare diseases are varied and complex, often lacking the visibility and understanding that more common illnesses receive. This can lead to challenges in diagnosis, access to treatments, and social support. We at Quiver Bioscience support efforts by Rare Disease Community to bring awareness and create a global community of patients, families, healthcare professionals, and researchers dedicated to improving the lives of those affected. rarediseaseday.org #rarediseaseday #rarediseaseday2024 #rarediseaseresearch

Stories from the communities we serve have always inspired our work to make a difference for people living with rare diseases around the world. In honor of Rare Disease Day 2024, we proudly partnered with RARE Revolution Magazine to launch #ItsRareForMe – a new global initiative to elevate the voices of the rare disease community, provide insights that go beyond statistics, challenge assumptions, and emphasize the value that patients bring to healthcare.   We invite you to read Rare Revolution Magazine’s special edition for #RareDiseaseDay featuring 10 impactful stories from people across eight countries in Europe, covering four rare conditions: https://lnkd.in/e8UXx7T4   #RareDiseases #ChiesiGlobalRareDiseases 

COUNTDOWN TO RARE DISEASE DAY Today it is two weeks left to one of the biggest days of the year – Rare Disease Day. The awareness day is celebrated worldwide and is used to create awareness about the special challenges and opportunities connected to living with a rare condition like OI. OIFE will use this year’s campaign to create awareness about the impact OI has on people with OI and their families. We will use data from our two main projects – the #impactsurveyOI and our Pain Project – both collaborations between the OIFE and the Osteogenesis Imperfecta Foundation #RareDiseaseDay #osteogenesisimperfecta

🌐 Rare Disease Day is about shining a light on the millions of individuals worldwide living with rare diseases and the unique challenges they face. It's a day dedicated to raising awareness, fostering understanding, and advocating for research and treatments that are as unique as the conditions themselves. 🚀 In the spirit of Rare Disease Day, let's underscore the importance of providing researchers and patient communities with equal access to the tools and resources they need. This access is key to advancing our understanding of rare diseases and developing new treatments. 💊 By democratizing research tools, we not only accelerate the path to discovery but also ensure that every patient has the opportunity to be part of the solution. It's about making research truly inclusive, giving every rare disease patient a voice in the quest for cures. 👏🤝 On this day, let's reaffirm our commitment to breaking down barriers in research and empowering patient communities. Together, we can make a difference in the lives of those affected by rare diseases. #RareDiseaseDay #ResearchEquality #PatientVoice

Tomorrow, as we recognize World Rare Disease Day, we stand together to raise awareness and advocate for those affected by rare diseases. At MedExpert, we emphasize the importance of biotech innovations in developing treatments, offering hope to those facing rare health challenges. #MedExpertBilling #RareDiseaseDay #BiotechInnovations #SupportForRareDiseases

🦓 Join the Zebra Colour Up Challenge! 🌈 On the occasion of tomorrow’s Rare Disease Day, I invite you to participate in the #ColourUp4Rare campaign. 🌟 🌍 Did you know? Over 400 million people worldwide are diagnosed with rare diseases. These conditions often go unnoticed, but they impact lives significantly. We need more research, better diagnostics, and accessible healthcare for those affected. 🎨 How can you help? - Paint a zebra stripe: Symbolize rare diseases by creating a zebra stripe. - Share this campaign: Spread awareness within your community. Let’s make these issues more visible! 🙌 #rarediseaseday #shareyourcolours #colourUp4RARE

We're thrilled to share the latest episode of CheckRare's vodcast, How Rare Diseases Impact Daily Life: Scleroderma, featuring our very own Dr. Elisabeth Kugler on living with scleroderma and Raynaud’s phenomenon. 🎙️ Check out this special episode, in which Elisabeth dives into her personal diagnostic journey, providing an insightful overview of scleroderma, its types, signs and symptoms, and current management strategies. She also sheds light on the challenges faced by patients with rare diseases and what physicians should know to better support them. 🌿 Don't miss this enlightening episode! 🎧 #RareDisease #Scleroderma #RaynaudsPhenomenon #PatientAdvocacy #MedicalResearch #ChronicIllness #CheckRare 👉 Listen here: https://lnkd.in/ehKWZXP8

Navigating the rare disease landscape calls for a seasoned guide! Guidance to cutting-edge treatments with expertise, hope, and personalized care through the unimaginable is our way of doing things...The Everlume Bio Way. We understand the complexity, the challenges, and the heartache that comes with rare diseases. With our proven track record and deep empathy, we provide tailored options for your child, transforming lives one step at a time. Everlume Bio isn’t just a research company or organization. We’re the complete guide you can trust to get into the lab and find what works. Reach out today to start your family’s journey toward transformation. https://hubs.ly/Q02RgHrr0 #RareDiseaseInnovation #PatientCareExcellence #HealthcareTransformation #EverlumeBio #GeneticBreakthroughs #HopeForFamilies #RareDiseaseSupport #ScientificLeadership #MedicalInnovation #TransformingLives

Short but powerful video. Please watch

Today is Rare Disease Day! Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. Share your story, spread the word. Let’s make Rare Disease Day a day that transforms lives! Image via: MDDA_Australia