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Today is #RareDiseaseDay - on the rarest of all days! 72% of all rare disease are genetic, and our team at Genomenon is on a mission to make genomic information actionable for patients living with rare diseases and cancer. Join us in helping raise awareness of patients and their families living with a rare disease, and the organizations and researchers working to find cures! Living with any illness presents challenges, but rare diseases, affecting fewer than 1 in 2000 people, pose unique hurdles. Neglected, they suffer from a lack of medical expertise, limited understanding, and constrained research, making diagnosis and treatment arduous. Patients often endure years seeking diagnosis and accessing treatment, while research efforts encounter similar obstacles. This emphasizes the importance of raising awareness about rare diseases during events such as Rare Disease Day. Learn ways to get involved: https://lnkd.in/gk6hbAF #rarediseaseday2024 #rarediseaseawareness #shareyourrare #showyourcolors

“Raising awareness and generating change for the 300 million people worldwide living with a #raredisease, their families and carers.” RareDiseaseDay.org, 2024 ❔ Did you know❓ 🧑 A disease is considered rare if it affects fewer than 1 in 2,000 people. 🌍 Over 300 million people worldwide are affected by a rare disease. 👶 70% of rare diseases start in childhood. 🔍 More than 6,000 rare diseases have been identified. 🧬 72% of rare diseases are genetic. 😷 1 in 5 diagnosed cancers are considered rare. Find out more: https://lnkd.in/gk6hbAF #rarediseaseday #patientrecruitment #clinicaltrials #innovativetrials

Rare Disease Day is marked every year on February 28 (or 29 in leap years). Rare Disease Day is a global movement dedicated to achieving parity in social opportunity, healthcare, and access to diagnosis and treatments for those living with rare diseases. The day aims to raise awareness about rare diseases, which impact nearly 300 million people worldwide. Despite their rarity, these diseases deserve support and attention as those affected often face isolation and unanswered medical issues. The theme for Rare Disease Day 2024 is "Share Your Colours," emphasizing the value of collaboration and support for those living with rare diseases.   This day not only raises awareness, but also builds community and promotes equity in healthcare access for those living with rare diseases.  Suhani Bhatnagar, the 19-year-old Dangal star, died of a rare condition called Dermatomyositis. Kenneth Alexander Mitchell, a famous Canadian actor, died of amyotrophic lateral sclerosis on February 24, 2024. These cases highlights the challenges faced by individuals with rare diseases, where early detection and treatment can significantly impact outcomes. Celgene Roche Novartis Johnson & Johnson Amgen Sanofi Pfizer are some of the top rare disease companies. #rarediseaseday #rarediseaseawareness #advancedtherapies #genetictherapy #dermatomyositis #amyotrophiclateralsclerosis #celltherapy PharmaScroll

This #RareDiseaseDay, TFS stands united in raising awareness and driving change for the 300 million people globally affected by rare diseases, along with their families and caregivers. Did you know that 1 in 5 #cancers are considered rare diseases? The realm of rare diseases extends through a broad spectrum of genetic disorders, including conditions like #DuchenneMuscularDystrophy and #HuntingtonsDisease. Rare diseases also manifest in various neurological conditions, such as #ALS and certain types of #epilepsy, among many other countless indications. And this is just the start. With extensive expertise in many of these areas, we recognize the critical importance of increasing awareness and supporting research. We are proud to contribute to the global movement towards better health outcomes, increased funding for research, and a more inclusive society for all, leveraging our depth of experience to advance research and bring hope to millions. Join us and learn more at https://lnkd.in/gk6hbAF. #TogetherWeMakeADifference

Honoring Rare Diseases Day: Illuminating Paths with Courage and Hope   As Rare Diseases Day approaches, at Curium we stand in solidarity with all those impacted by these often-overlooked conditions. Today, we raise our voices to increase awareness, support, and understanding for individuals and families navigating the challenges of rare diseases.   In the words of Shane Peters who will be speaking with his mother to Curium employees on Rare Disease Day, "As we faced the unknown depths of a rare diagnosis, our bond grew stronger, illuminating the path forward with courage and hope."   Shane's experience, alongside his mother's battle with Neuroendocrine Tumors Cancer, serves as a poignant reminder of the strength and resilience found within the rare disease community.   Together, we can shine a light on the challenges faced by millions and work towards a future where rare diseases are better understood and effectively treated.   Join us in raising awareness, spreading compassion, and supporting those in need. Together, we can make a difference.   Learn how you can get involved: https://lnkd.in/gk6hbAF #RareDiseasesDay #CuriumCares #HopeForRare #NETs #Neuroendocrine

// Rare disease clinical trials // 💊 𝗢𝘃𝗲𝗿 𝟵𝟬% 𝗼𝗳 𝗿𝗮𝗿𝗲 𝗱𝗶𝘀𝗲𝗮𝘀𝗲𝘀 𝗵𝗮𝘃𝗲 𝗻𝗼 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁: understanding the rare disease framework is key to be able to offer study participants adapted solutions and as such, positively contribute to important and necessary clinical research conducted on rare diseases.   𝗞𝗮𝘆𝗲𝗻𝘁𝗶𝘀 𝗼𝗳𝗳𝗲𝗿𝘀 𝗮𝗻 𝗲𝘅𝘁𝗲𝗻𝘀𝗶𝘃𝗲 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝗶𝗻 𝗿𝗮𝗿𝗲 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗰𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝘁𝗿𝗶𝗮𝗹𝘀. To help make these trials successful: 💡 We have developed a deep knowledge of patients’ needs 👔 We have the ability to manage complexity 🧰 We propose options to manage compliance Download the case study: http://bit.ly/3ZrwJzR #kayentis #eCOA #clinicaltrials #raredisease

RARE DISEASE DAY 2024 💡 Since 2008, #RareDiseaseDay takes place on the last day of February each year. The main objective is to raise #awareness amongst the general public and decision-makers about rare diseases and their #impact on patients’ lives. 💊 Building awareness of rare #diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. 🏥 A disease is defined as rare in Europe when it affects fewer than 1 in 2000 people. Worldwide, there are over 300 million people living with one or more of over 6000 identified rare diseases. This means, 3.5% - 5.9% of the worldwide population are currently affected. 👨🔬 Whilst most diseases are a result of #infections, #allergies and environmental causes, 72% of rare diseases are #genetic – over 70% of those genetic rare diseases start in childhood. 😷 We at SciPro are more than proud to partner with some of the most #innovative biopharmaceutical companies in Germany, the UK and the US, focusing on #developing life-changing #therapies for people living with rare disorders. 🤝 Are you aware? Check out ⚠ Laura Hulleys Blog "RARE" - a blog that aims to highlight some of the great work going on across the rare disease space Blog: https://lnkd.in/efp8HXsS Youtube: https://lnkd.in/eUC95uG9 ---------- Check out the official website below for more information, events and global news: https://lnkd.in/dAMRJa6

Today is Rare Disease Day, a global movement dedicated to raising awareness and generating change for the 300 million people worldwide living with a rare disease, along with their families and caregivers. The goal is to promote equity in social opportunity, healthcare, and access to diagnosis and therapies for those affected by rare diseases. Let us join hands and work towards a better future for those living with rare diseases. #RareDiseaseDay #GlobalMovement #HealthcareEquality #tcsadd #clinicaltrials #clinicalstudies #pharma #biotechnology #pharmaceuticalindustry #tcs https://lnkd.in/gm_tfbe6

Rare disease therapy clinical development presents unique challenges, from regulatory pathway selection to data collection and cleaning. @Veristat's experts specialize in coordinating all aspects of the development process, accounting for 35% of our work. Learn more > https://lnkd.in/gCN59Wew Reach out to learn more! #RareDiseaseMonth #RareDisease #UltraRareDisease #Veristat