FH Europe Foundation’s Post

Today, the rarest of day of the year, we recognize #RareDiseaseDay. This day is dedicated to raising awareness for the 300 million people affected by rare diseases across the globe. We at The Evidence Base® are proud to support this area by covering the many ways in which real-world evidence and the insights this brings is contributing towards the research and development of new treatments and interventions for rare diseases. https://lnkd.in/ed55VczJ

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

Attending the Rare disease forum 2024 in Brussels! The case for an European Action Plan for Rare Diseases is crucial to secure Europe’s competitiveness in R&D for people living with Rare Diseases and to overcome geographic inequalities. Let's work together to ensure that all individuals living with rare diseases have access to the necessary resources and support they need. #RareDiseaseForum #EuropeanActionPlan #RareDiseases #Brussels2024

🌈 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

Rare Disease Day was first observed in 2008 by EURORDIS-Rare Diseases Europe and the Council of National Alliances to raise awareness about rare diseases. 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. The theme for Rare Disease Day 2024 is "Share Your Colours," emphasizing the importance of collaboration and support for those with rare diseases. This day aims to raise awareness, build a community, and promote equity in healthcare access for individuals with rare diseases. It serves as a reminder that while these diseases are individually rare, they collectively impact millions of lives. In Europe, there is growing momentum for a comprehensive European Action Plan for Rare Diseases, supported by robust EU policy initiatives and concrete objectives. Various European nations are also progressing with their national strategies to tackle rare diseases. #health #rarediseaseawareness #raredisease #rarediseaseday #shareyourcolours #ActRare2024 Dragoslav Popovic Dina Štern Linda Franicevic Lisa A. Jones, GGAF CEO, PMHA Chrissy Sykes Adam Elman Andrej Bojic, M.A. Dr Muhammad Tahir Tabassum Prof. Antonio Imeneo -UniFUNVIC Brasil- Dario Ruggiero Jasmina Siderovski Santosh G

Today marks the beginning of Autoimmune Awareness Month. At AliveDx, we stand in solidarity with those battling autoimmune diseases. It is estimated that around 4-10% of the global population is affected. Let's join hands to raise awareness. #autoimmuneawarenessmonth

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 Diseases strong!!! How can you make rare diseases tangible? Let’s have a rare conversation 2.29.24 National Rare Diseases. Day!! #visualidentity GettingUp Org Inc SixDegrees.Org The Myositis Association Myositis Support and Understanding Association, Inc. (MSU)

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

In the rural areas, rare diseases may be labelled a "curse", as it was in this case of the young gentleman with Neurofibromatosis type 1 that we're managing. We highlight the basic management of Neurofibromatosis 1.