CONNECTA Therapeutics’ Post

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

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

It's finally here - February 29th, the rarest of days, and #RareDiseaseDay! Please like, share, comment and #SpreadTheWord to show patients with #RareDiseases that we care And, if you are looking for support in creating personable, effective and impactful #Communications in the #RareDisease space, to increase access to treatments, support patients and ultimately improve lives, you know where I am! #MedComms #MedicalCommunications #Freelancer #Consultant

There is so much progress yet to be made into researching and educating on rare diseases. Learn what you can do to help on #RareDiseaseDay, February 29, the rarest day of the year: bit.ly/RDD2024 #rarediseaseday #rarediseaseresearch

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

🌏 Today marks Rare Disease Day, a global observance focused on raising awareness for rare diseases and their impact on patients' lives. This day is a call to recognize the challenges faced by those living with these conditions and to emphasize the importance of research and development in this field. 🌍 Rare Disease Day brings to light a crucial understanding: although we may not all be directly affected by rare diseases, each of us can be an integral part of a broader effort. This day serves as a call to action for everyone to engage in raising awareness and understanding, supporting research, and showing solidarity with those facing these challenges. Our collective efforts, empathy, and commitment can make a significant impact in the lives of those living with rare diseases, creating a more inclusive and supportive environment for them. www.rarediseaseday.org #RareDiseaseDay #HopeThroughInnovation https://lnkd.in/dcxc2FVY

Join our Congenital Hyperinsulinism International support Facebook forum! 🫂💙The forum allows 2,400+ HI families the opportunity to connect with one another and offer support to those navigating similar challenges. You can join the forum by searching "Congenital Hyperinsulinism International Family Support Forum" on Facebook or by visiting https://lnkd.in/dR5m7mzF #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Great discussions during the #ECRD2024 Rare Disease conference how to strengthen the health systems through #ERNs -European Reference Networks and how to bridge the gap for Rare Disease treatments. Among others Mariangela Pellegrini as panellist representing ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) accentuates the importance of sharing data via ERN Registries connecting care with cure.

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

Today is #RareDiseaseDay. A day to raise awareness of the need to develop new therapies for people living with rare diseases around the globe. A day to focus on improving healthcare for people with rare diseases. To bring together everyone for research and innovation for rare diseases. Everyone matters! Rare, but not alone. 💚💜💙🩵 #rarediseaseday2024