Caidya’s Post

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

Do you know how many rare diseases start in childhood? Do you know what equity for people living with rare diseases really means? Sunil's daughter, Kushi, lives with FOP. And so does Erin. Living with a rare disease, or caring for someone who does, means you end up learning so much about rare diseases and the 300 million people around the world living with a rare disease. This February 29, the rarest day of the year, is a chance for all of us to learn about rare diseases. Join us for #RareDiseaseDay. Engage with the messages. Spread the word. Share your story. Give to help find treatments and a cure for FOP. Get started: ifopa.org/rare_disease_day #cureFOP #RareDiseaseDay

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

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

Did you know that there are over 300 million people living with a rare disease? Today is Rare Disease Day — and we are proud to join this global effort to raise awareness and support those affected by these uncommon, but significant conditions. Rare diseases are defined as those affecting fewer than 1 in 2000 people. This presents a global challenge, as the relatively small number of people affected makes it difficult to secure resources for treatment, research, and support. Raising awareness for these conditions helps empower those affected, reminding them that they are not alone. To learn more about rare diseases and how you can get involved, visit rarediseaseday.org! #rarediseaseday #clinicaltrials

Why the Zebra as a symbol for rare diseases? 'When you hear the sound of hooves, think horses, not zebras', is a phrase taught to medical students, coined by Dr Theodore E. Woodward in the 1940s, to encourage students to expect the most common illness associated with symptoms presenting. A rare disease is the zebra – one of the 7,000 diseases that individually present a tiny patient population, yet collectively number over 400 million people throughout the world. Their symptoms can often be confused with more common conditions or present a mystery altogether, contributing to an average 4.8 year odyssey to find a correct diagnosis. For the vast majority (90% of known rare diseases), there remains no approved treatment. That is why Alexion, AstraZeneca Rare Disease, along with others, is supporting the ColourUp4Rare initiative across several countries in Europe this week: to raise awareness and visibility for all people with rare diseases and their families. Have a look for yourself at https://lnkd.in/eRDgTNw7

February 29, 2024 marks International Rare Disease Day, but our commitment to fighting rare diseases extends far beyond a single day. With over 6,100 rare diseases identified, it's sobering to note that less than 6% have effective treatments. Rare diseases impact not just individuals, but entire families, leading to a lifetime of uncertainty. I'm proud, at Ipsen to be part of the daily effort to combat rare diseases. On this International Rare Disease Day, let's raise awareness of the common challenges faced by this community and advocate for the attention they deserve in healthcare. Discover some key facts on this small carrousel! #RareDiseaseDay #HealthcareAwareness #FightAgainstRareDiseases

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

Empowering Change: Join Prevail InfoWorks in Amplifying Awareness for Rare Diseases Day   Today is #RareDiseaseDay, the rarest day of the year! Prevail InfoWorks is proudly supporting Rare Diseases Day on February 29th, amplifying awareness for the millions affected by rare conditions worldwide. Discover more today and how you can get involved by visiting their website: https://lnkd.in/e2nh5pd Join us in making a difference by spreading awareness and supporting Rare Diseases Day. Together, let's ignite change. “Approximately 39 million Americans live with a rare disease. That is 1 in 10 of us” - National Organization for Rare Disorders #rarediseaseday #rarediseaseawareness #raiseawareness #showyourstripes #togetherstronger #rarediseaseday2024

Today is World Young Rheumatic Diseases (WORD) Day! ✨🌍 On this special day, we unite to shine a light on the importance of early diagnosis and the challenges faced by young individuals living with rheumatic diseases. 💙 Rheumatic diseases affect millions worldwide, and when it comes to the young, early detection can make all the difference. Today, let's spread the word, educate, and support our young warriors in their journey towards a healthier future. For more information on how you can help or learn more about young rheumatic diseases, visit wordday.org. Let's make #WORDDay2024 a turning point for awareness and action. Together, we can make a difference! 💪💕 #lupus #lupuswarrior #lupusawareness