The Evidence Base®’s Post

Today is #RareDiseaseDay, a day dedicated to raising awareness about the challenges faced by those living with rare diseases. These conditions often are delayed in diagnosis and possibly even untreated due to a lack of research and understanding of the disease. Let's use this day together with RaDiOrg to show our support and solidarity with the brave individuals battling rare diseases every day. Every effort counts, whether it's educating ourselves, advocating for more research, or simply showing empathy and understanding. At Boehringer Ingelheim we stand together for those affected by rare diseases. #ShareYourColors #RareDiseaseDay"

Today is #RareDiseaseDay, a day dedicated to raising awareness about the challenges faced by those living with rare diseases. These conditions often are delayed in diagnosis and possibly even untreated due to a lack of research and understanding of the disease. Let's use this day together with RaDiOrg to show our support and solidarity with the brave individuals battling rare diseases every day. Every effort counts, whether it's educating ourselves, advocating for more research, or simply showing empathy and understanding. At Boehringer Ingelheim we stand together for those affected by rare diseases. #ShareYourColors #RareDiseaseDay"

Happy #RareDiseasesDay from Label2Enable! Health apps can help manage #RareDiseases and its symptoms - as well as contribute to research through the data they generate.

Individual rare diseases are exactly that, rare. But together, children and adults living with rare diseases represent a significant proportion of our population. Did you know that there are over 300 million people living with a rare disease worldwide? That's equivalent to the 3rd largest country's population, or 5% of the entire world's population. 🌎 Despite this, rare diseases are often overlooked, with many impacted individuals living without equitable access to diagnosis, healthcare, and social support. For example, half of rare diseases don't have a foundation or research support group, and 95% lack an FDA-approved treatment (visit globalgenes.org to learn more). Rare Disease Day is coming up this February 29th, and we ask for your help to raise awareness of this day. To learn more and get involved, visit www.rarediseaseday.org and follow https://lnkd.in/g4zE8QpK. 💙 #RareDiseases #RareDiseaseDay

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

The European Reference Networks (ERN) are an important EU initiative to better diagnose, care for and treat people with rare and complex diseases. The ERNs offer patients access to specialized care and crucial knowledge on their rare diseases. In a recent interview, Holm Graessner, Chair of the ERN Coordinators, highlights the significant impact of the ERNs on patient care. Read more on the achievements of the ERNs ➡ https://lnkd.in/gUR8Exfs #rarediseaseday #rarediseases #patientcare #lightupforrare #ERNeu #Europeanreferencenetworks

Happy Leap Day, the most uncommon date on the calendar! Each year, on the last day of February, the global community recognizes the more than 300 million people around the world who live with one or more of the 6,000 identified rare diseases. Learn more about rare diseases, continued research, and ways that you can make an impact: https://bit.ly/3wHDB3n #rarediseaseday #rdd24 #strongproundmany

Not exactly a work post although I'm on medical leave being investigated for a number of immuno-autoinflammatory diseases. Am also being well supported by the #IDFA 6000 rare diseases - 6000 reasons to spread awareness! Did you know there are over 6000 identified rare diseases? This year, in the lead-up to #RareDiseaseDay 2024, let's shine a light on all those affected by a rare disease and amplify the voices of those who inspire us every day! Join the movement and make a difference! Share your own stories, raise awareness, and support working towards breakthroughs in rare disease research and diagnosis. Together, we can create a world where every rare disease has a voice and no one feels alone in their journey! #WearYourColours to support all those living with a rare disease, worldwide. #RareDiseaseDay

It’s #RareDiseaseDay. Up to 36 million people in the EU live with a rare disease. To tackle rare diseases, the EU has implemented various initiatives aimed at helping improve the diagnosis, care and treatment of patients suffering from rare diseases. One of such initiatives is the establishment of the European Reference Networks (#ERNs) for rare and complex diseases. HaDEA spoke with Holm Graessner, chair of ERN Coordinators, to learn more about how the network is supporting patients living with rare diseases by providing them better access to diagnosis and treatment. https://lnkd.in/gUR8Exfs

Happy Leap Day, the most uncommon date on the calendar! Each year, on the last day of February, the global community recognizes the more than 300 million people around the world who live with one or more of the 6,000 identified rare diseases. Learn more about rare diseases, continued research, and ways that you can make an impact: https://bit.ly/3wHDB3n #rarediseaseday #rdd24 #strongproundmany