Bojana Bogojevic’s Post

Rare Diseases are not as rare as you might think: over 7,000 different rare diseases have been identified, affecting over 300 million people around the world. But 95% of rare diseases have no treatment available. It's time to make rare diseases a global health priority and improve services for Persons Living with a Rare Disease, reduce the financial burden of rare diseases for PLWRD and their families, and enhance knowledge sharing and international collaboration. Together, we can improve the lives of People Living with a Rare Disease. Find out more by reading our #WHA77 side event agenda and concept note: https://lnkd.in/dPbBU4Tr

Rare diseases are not as uncommon as we imagine. Close to 7000 rare diseases affecting 300 million people have been identified, which is 60 times the population of Costa Rica, my country. What impresses me the most is that 95% of these diseases lack treatment, and on average, it takes 6 years for people to be diagnosed. Should rare diseases cease to be an exceptional issue in public health? Should we invest more in rare diseases to reduce the economic burden on patients?

Make your voice heard! Take the new #RareBarometer Survey on the impact of rare diseases on daily life! This survey is open to people living with a rare disease and their family members from any country in the world. 👉 The Survey is available in 26 languages here: https://buff.ly/3LTo4lF #NCBRS #NCBRSRare EURORDIS-Rare Diseases Europe RARE DISEASES INTERNATIONAL

Tomorrow, the European Conference on Rare Diseases begins. Insisting on a European Plan for Rare Diseases could be a key to some problems. We all hope that the new leadership of Eurordis will be inspired by the ideas of everyone present, in person or online. APN will be there! #ECRD2024 #rarediseases #apneuromusculares #doençasraras #RareEU

🌈 Today, let's share our colours for rare disease awareness! 🎨 As we come together on this special 'extra' day, I am grateful to contribute, even in a small way, to enhancing the lives of the 300 million individuals worldwide living with a rare disease. By uniting our expertise in digital health, responsible data sharing and trustworthy AI with broader projects aimed at data sharing and analysis for rare diseases, we hope to make a meaningful impact. ⁉ Why? Because at our Digital Health and Work Unit, we aim not only to advance research, diagnosis and treatment but also to ensure equitable and ethically sound solutions. This way ,we want to paint a brighter future for those affected by rare diseases, one where everyone has access to the support and resources they need! #raredisease #rarediseaseday #digitalhealth #datasharing #trustworthyai

📣 Join us for Coffee with the Experts: Precancerous Vulvar Disease 🌟 We invite you to an in-depth discussion on Precancerous Vulvar Diseases on December 6, 2023, at 10:00 AM EST/4:00 AM CET. don't miss it! 🔍 Event Details: Date: December 6, 2023 Time: 10:00 AM EST / 16:00 CET Duration: 1 hour 1 hour Format: Live event This live discussion will feature experts who will delve into precancerous vulvar diseases and answer your questions in real time.Have a question? When you register you will have a space where you can leave your questions before December 2. It is not necessary to be an expert in vulvar diseases to participate. This event is accessible to healthcare professionals and anyone interested in the topic. Mark the date on your calendar and participate in this important discussion on women's health. Your participation is essential to make this event a success. 🙌💬 Register Now: https://lnkd.in/ehwjYd5z #WomensHealth #VulvarDisease

Today, we stand in solidarity for Rare Disease Day, highlighting the struggles of millions facing rare conditions worldwide. Though these diseases are uncommon, their effects are significant. 🌍 Why It Matters: About 300 million people worldwide battle rare diseases. Our mission to make affordable medicines available to all is deeply aligned with the movement's purpose of working towards equity in access to treatments for people living with rare diseases. Join us in supporting #RareDiseaseDay 2024 and learn more about the global movement. EURORDIS-Rare Diseases Europe #ShareYourColours #LightUpForRare #AccessibleMedicine https://lnkd.in/gk6hbAF

Rare Disease Day was first observed in 2008 by #EURORDIS and the Council of National Alliances to raise awareness about #rarediseases. It falls on the last day of February, but in leap years like 2024, it is observed on February 29th. This day aims to shed light on the challenges faced by individuals and families affected by rare diseases. #rarediseaseday EURORDIS-Rare Diseases Europe

Rare Disease Day is this Thursday, 29 February this year (the rarest day of the year). It’s a day to raise awareness and generate positive outcomes for the 300 million people with a rare disease. ConnectGroups is holding a Rare Disease Day Expo with Perth Children's Hospitaland and Fiona Stanley Hospital staff, for our members operating in this space to increase awareness of conditions affecting Western Australians. Increasing awareness of rare diseases is crucial, as healthcare knowledge and research outcomes are often limited, resulting in delayed diagnoses, while expensive treatments pose financial burdens and lack research resources. HOW YOU CAN HELP? Join us this week, as we celebrate and share stories. 💠Like and share our #RareDiseaseDay2024 posts 💠Share your story 💠Invite your friends and family to learn more about some of the rare conditions For more info about ConnectGroups’ work in the Rare, Genetic and Undiagnosed Conditions sector, visit: https://lnkd.in/enH8gBfH #RareDiseaseDay2024 #RareDiseaseDay https://lnkd.in/gk6hbAF

Today marks Rare Disease Day 2024, a time to shine a light on the challenges faced by those living with rare diseases. Show your support and unite with us in #PlayTheRareGame, as we foster awareness and cultivate a global community that transcends boundaries. Let's pass the ball to pass the word! Join the movement at playtheraregame.com #RareDiseaseDay EURORDIS-Rare Diseases Europe Chiesi Global Rare Diseases