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300 million, equivalent to the population of the US 1 in 17; approximately 5% of the global population 30 million in the US alone 1 in 5 cancers Collectively, rare diseases are not so rare 💙 💜 🧡 But individual statistics don't always tell the full story. Personally, I am one in 10,000 (the least rare of the rare diseases!) Despite the above stats, rare diseases are often lonely places This #RareDiseaseDay, please spread the word, join the conversation, and let's #RaiseAwareness for all those millions of people who are living with rare disease; to light them up, improve equity, increase access to treatments and demand better for these patients Comment below to #ShineALight on an individual #RareDisease, or use the hashtags #LightUpForRare #ShareYourColours #ShareYourRare #ShowYourStripes #LeapDay, #LeapYear, #LeapDay2024 and #RareDiseaseDay2024 to get involved

What is #rarediseaseday? A moving video from patients with rare diseases around the world can help us go beyond statistics and get an inkling of real impact #rarediseaseday2024 #myeloma #lightupforrare https://lnkd.in/eREHWfUZ

Today, 29 February, is a unique day in our calendar, as we celebrate World Rare Disease Day.   #rarediseases are diseases that have a low prevalence in the population, namely when they affect less than 5 per 10,000 inhabitants. On this year's international #RareDiseaseDay2024, we want to highlight that promoting research and study on rare diseases allows us to raise awareness and disseminate the struggle of all affected people, and increases the availability of orphan drugs, quickly and equitably for all patients.   It is essential to promote a global mobilisation to place the reality of these pathologies on the public agenda.   Vídeo: https://lnkd.in/eYtprMMq

Thyroid Diseases...

Today, we would like to draw your attention to Rare Disease Day. Every year, on the last day of February, we globally recognize the impact of rare diseases that affect the lives of countless individuals. While each of these diseases may be rare individually, together they are not - more than 300 million people worldwide are affected by one or more rare diseases. 🌍 It's crucial to understand that these diseases often present significant challenges for those affected and their families. Many rare diseases are life-threatening, chronic, and have no cure. That's why continued research and development efforts are paramount to improving patient outlooks. Let's work together to create a world where rare diseases are not overlooked. Check out the official Rare Diseases Day video 2024 to hear directly from patients: https://lnkd.in/e3w93qUp #RareDiseaseDay #Awareness #Community

There are 5 days left until Rare Disease Day! Share your story about living with a rare condition on NORD’s website: https://lnkd.in/giQkTy5u – Image Description: Rare Disease Diagnosis and Treatment. There are more than 10,000 known rare diseases. Diagnosis can take five years or longer. Most rare diseases lack an FDA-approved treatment or cure. NORD logo. Rare Disease Day logo. #MoebiusSyndrome #MoebiusSyndromeFoundation #ShowYourStripes #RareDiseaseDay #FacialDifference

🗣️ We provided 6,000+ people living with a rare disease the opportunity to voice their opinions on 🧬#NewbornScreening, and the results of the Rare Barometer survey are now available! Explore these striking, insightful, and highly motivating findings here: 🔎https://lnkd.in/dqXVPC88 #Screen4Care #Diagnosis #RareDiseases EURORDIS-Rare Diseases Europe

#WIMSmonth - Dr. Tanya Kalin's main goal is to understand chronic lung diseases and develop new therapies to help patients. Watch here to learn more on her research! #uazmedphx #researchervignette

Imagine your child's diagnosis has no known cure. That's the reality for millions with rare diseases. #RareDiseaseDay shines a light on their struggles and the fight for new treatments. Rare disease research is full of obstacles. Funding is always a challenge, and well-meaning policies like the IRA can add roadblocks for treatments that could help multiple diseases. This is why the bipartisan ORPHAN Cures Act is so important to protect rare disease innovation. On Rare Disease Day and beyond let's continue to push for policies that support both innovation and patients. Today, we celebrate the strength of the rare disease community. It's a day to demand a future where hope and new treatments are the norm. How can we all make a difference? To learn more about rare diseases, please visit https://lnkd.in/eysz6694

Rare Disease Day: February 29th - the rarest date Today, we join in the global observance of Rare Disease Day to raise awareness for rare conditions and advocate for improved access to treatment and medical representation for individuals with rare diseases. Did you know….. ➡ A disease is rare when it affects fewer than 1 in 2,000 people. ➡ 1 in 5 cancers are rare. ➡ 70% of rare diseases start in childhood. ➡ More than 6,000 diseases have been identified. Labyrinth Digital is committed to collaborating with our clients to advance education on rare diseases and the treatments that enhance the lives of patients with rare conditions and their families. #rarediseaseday2024 #raredisease #awareness #healthcareeducation