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Ivy Greene's post about today's Rare Disease Day 2024 was so good I had to drop it in below. I am proud to work with amazing colleagues, clients and partners working hard to bring therapies to all in need - regardless of the patient population! Jennifer Farnham Shoshana Marske, HRBP Carrie Hopkins Patrick Sills Rob Swenson +++ Today is Rare Disease Day, which is celebrated on the last day of February each year. This year is extra special, with it falling on the rarest day of the year- Leap Day! Most healthcare professionals are taught “when you hear hoofbeats, think horses not zebras,” implying the most common answer is typically correct. While this may be true, over 30 million Americans and over 300 million people across the globe live with a rare disease, which is defined as an individual disorder or disease impacting fewer than 200k people. Many CRBers are helping share their stripes today to help illuminate the importance of developing and distributing effective and equitable treatment options for patients with rare diseases. We proudly partner with a myriad of clients who tirelessly work on creating treatments for rare diseases. Let’s raise awareness for all the individuals and their loved ones navigating these rare “zebra” diseases, and allow them to show their stripes! #crblife #rarediseaseday #rarediseaseday2024 #rarediseaseawareness #crb

Did you know that there are over 300 million people worldwide living with a rare disease? A rare disease is any condition that affects fewer than 1 in 2,000 people. Some examples of rare diseases are cystic fibrosis, Huntington's disease, and anorectal malformation. Rare diseases are often invisible, neglected, and misunderstood. People with rare diseases face many challenges, such as delayed diagnosis, lack of treatment options, and social isolation. February 29th is Rare Disease Day, a global initiative to shine a light on rare diseases and their impact on people's lives. This year's theme is "Share your colors", which invites everyone to show solidarity and celebrate diversity with the rare disease community. Join us in spreading the word about rare diseases and Rare Disease Day. You can share your photos, videos, and stories using the hashtag #RareDiseaseDay, Together, we can make a difference for people living with a rare disease. Let's share our colors and show them that they are not alone! #taibarare #accessrare #rarediseases #RareDiseaseDay #ShareYourColours #RareIsStrong #RareDiseases #RareAwareness

Today, February 29, is Rare Disease Day, a day to shed light on the challenges faced by the 300 million individuals worldwide who live with rare diseases, as well as their families and caregivers. At Xeris, we stand with this community and recognize their perseverance in the face of adversity.   Rare diseases impact millions globally, yet these diseases often go undiagnosed or misunderstood. This is an occasion to unite, amplify voices and drive meaningful change.   As a company committed to advancing patient care, innovation and accessibility, Rare Disease Day is important for us. We believe in the power of collective action to make a tangible difference.   To all the individuals and families touched by rare diseases, your strength inspires us. We pledge to continue our support, to drive innovation, and to advocate for a brighter, more inclusive future.   Join us in honoring Rare Disease Day. Let's work together to create a world where every patient receives the care and support that they deserve.   #RareDiseaseDay #ShowYourStripes Rare Disease Day National Organization for Rare Disorders

🌐 Rare Disease Day is about shining a light on the millions of individuals worldwide living with rare diseases and the unique challenges they face. It's a day dedicated to raising awareness, fostering understanding, and advocating for research and treatments that are as unique as the conditions themselves. 🚀 In the spirit of Rare Disease Day, let's underscore the importance of providing researchers and patient communities with equal access to the tools and resources they need. This access is key to advancing our understanding of rare diseases and developing new treatments. 💊 By democratizing research tools, we not only accelerate the path to discovery but also ensure that every patient has the opportunity to be part of the solution. It's about making research truly inclusive, giving every rare disease patient a voice in the quest for cures. 👏🤝 On this day, let's reaffirm our commitment to breaking down barriers in research and empowering patient communities. Together, we can make a difference in the lives of those affected by rare diseases. #RareDiseaseDay #ResearchEquality #PatientVoice

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

Chelsea's Hope proudly supports Rare Disease Day. It's in two weeks, on Thursday, February 29. 🦓 On Rare Disease Day, we will share Lafora Disease stories and amplify the voices of the global rare disease community of 400 million+ people. 💡 Let's shine a light on those facing the challenges of rare diseases. We'll keep posting #LaforaDisease facts. You can join by resharing on social media or getting involved in an event near you. Find resources to raise awareness on our site and your local Rare Disease Day webpage: https://lnkd.in/dQPUYjyh Global Genes and the National Organization for Rare Disorders also have amazing resources. Some hashtags you can use for socials: #RareDiseaseDay, #ShowYourStripes, #ShareYourColours, #LightUpForRare, #CareAboutRARE. How will you observe Rare Disease Day? #RareIsNotCommon #RareDisease #RareDiseaseAwareness #FightLafora

🌟 Meet Aimee. She answered the call to share her story to spread EHE awareness for Rare Disease Day. Her full comments are available on the Faces of EHE page on our website: https://lnkd.in/edmZ9wW6 #RareDiseaseDay is Thursday, February 29, 2024. Join us in honoring this special rare day! 👊 The most impactful thing you can do is share our patient stories to spread #EHEawareness. ❓Why is Rare Disease Day important? EHE is an ultra-rare disease with an incidence rate estimated at 1 in 1 million people. With 6000+ identified rare diseases and more than 300 million people affected worldwide, EHE patients are not alone. Together, with the rare disease community, we work towards equitable access to diagnosis, treatment, care, and opportunity. 🌎 Rare Disease Day awareness activities: - Light Up for Rare - Light up your home or office building in the official Rare Disease Day colors (navy blue, green, pink, light blue). - Use Instagram's Global Chain of Lights filters (Visit rarediseaseday.org for instructions.)

Rare is many. Rare is strong. Rare is proud. Did you know more than 6,000 rare diseases have been identified? Rare disease patients can have individualized experiences living with their disease, but Rare Disease Day is a powerful reminder that you are not alone. You belong to a global community of strong, unique, and inspiring individuals. PDSA joins the rare disease community in raising awareness about the challenges rare disease patients face in pursuit of health diagnoses and treatments, and in amplifying rare voices around the world. Share Your Colors this #RareDiseaseDay by sharing your ITP journey: https://lnkd.in/eFP44Ey6.

400 million people around the world live with a rare disease, fighting invisible battles every day. This Rare Disease Day, let's understand, empower, and combat against the rare diseases. Our commitment to the rare disease community has empowered, educated, and positively influenced the lives of those affected. Reach out for more details and be part of the change. For more information, please Connect with us: https://lnkd.in/gEQqd9jG Source:-  https://lnkd.in/gWQ392EN Together, we can raise awareness, advocate for change, and create a more inclusive world. Harsha K Rajasimha Indo US Organization for Rare Diseases (IndoUSrare)  Narayanan Govindarajan Ramya T karur Reena Kartha Nisha Venugopal National Organization for Rare Disorders EveryLife Foundation for Rare Diseases Global Genes #RareDiseaseDay #InvisibleBattles #400MillionHeroes #Empowerment #Awareness 

Tomorrow, February 29th, is the rarest day of 2024. Not only because it's a leap-year, but because it's #RareDiseaseDay. We would like to give a big shout-out to all the brave people battling rare diseases and the incredible families and friends supporting them. Together, let's advocate for more research, better treatments, and increased support. Let's continue raising awareness and bringing hope to those facing the challenges of rare diseases every day. If you would like to know more about rare diseases and how you can support, please visit National Organization for Rare Disorders website. #RareDisease #OrphanDrug #RareDiseaseAwareness #