Please take a few minutes to learn about this devastating illness and spread awareness where you can….
📆 Mark your calendars: January 28 is #WorldLewyBodyDay! On this day, join Lewy Body International, a global network of #Lewybodydementia patient-advocacy organizations, in spreading awareness and increasing understanding of this little-known disease in your community. Share this post and visit https://ow.ly/3VvI50UCiv1 to learn more about Lewy and help others do the same.
A few years ago we had the opportunity to sit down with rare advocate, Kelly Barendt. She began using her social media platform to help others going through challenges with their rare disease. Today, she's built an incredible online community, sharing her journey, raising awareness, and offering support to countless others along the way! Watch Kelly's full story at TheBalancingAct.com/Rare and see her featured in our guide: Navigating Your Rare Disease, linked in our bio! 🔗 #BehindTheMystery #RareDiseaseAdvocate #RareDiseaseAwareness #RareDiseaseCommunity #CureFA #FAawareness
The countdown is on for #RareDiseaseDay 2025! Watch this year's video below, and get ready to participate by finding events happening near you here ➡️ https://lnkd.in/e8KBUvki
And the day has arrived! It is now officially 100 days until #RareDiseaseDay! We are so excited to see how you will be making Rare Disease Day 2025 a special and memorable one. A heartfelt thank you to our 70+ national alliances who lead the campaign in their countries, inspiring and empowering local communities to take part. Let us know your plans in the comments and be sure to send your events in through our website to be shared with others. Let’s work together to generate real and lasting change in the world.
Founder | CEO | Building the Future of Regulated Digital Health & SaMD Innovation | Human-Centered, Data-Driven, Ready for What’s Next. #HealthTech #AI #HealthInnovation
The countdown is on till Rare Disease Day! As Rare Disease Day shared their official video for 2025, we are happy to recognize and raise awareness for patients, families, and care givers around the world that are affected by rare diseases. At Innovenn and Improvita, we are so happy to see the advancements the industry has made in rare diseases over the past decade. Once a field with limited options and a lot of challenges, there has been an upward trajectory in the percentage of drugs approved to treat rare disease. In 2023, more than half of the FDA’s novel drug approvals were for patients with rare disease. But the unmet need goes beyond the need for new therapies, and includes the need for timely and accurate diagnostics, prognostics, and novel health monitoring tools. Are you developing treatment, devices, or software as a medical device (SaMD) to support the health and wellness of patients with rare disease? Contact us to see how we can facilitate development, approval, and adoption of your innovation: https://lnkd.in/gUnkgfZu Let's unite in celebrating progress and sharing stories. Together, we will work towards a future where every patient feels empowered, engaged, equipped, and enabled to take care of their health and wellness. Do you have plans for #RareDiseaseDay? Share them below! Visit the Rare Disease Day website to learn more about the organization: https://lnkd.in/gCHWGjMe #WeCareAboutRare #PrecisionMedicine #Innovation
And the day has arrived! It is now officially 100 days until #RareDiseaseDay! We are so excited to see how you will be making Rare Disease Day 2025 a special and memorable one. A heartfelt thank you to our 70+ national alliances who lead the campaign in their countries, inspiring and empowering local communities to take part. Let us know your plans in the comments and be sure to send your events in through our website to be shared with others. Let’s work together to generate real and lasting change in the world.
Today marks the start of #GaucherAwarenessMonth. Gaucher is a rare, progressive disease with symptoms that worsen over time. Yet, patients with type 1 Gaucher disease, the most common form, can experience diagnostic delays up to 10 years. It's important to highlight patient stories in rare disease, here's one. #rareispowerful #raredisease #findthezebra
As part of #GaucherAwarenessMonth, we’re shining a light on the resilient patients who live with this #RareDisease and the importance of having a community to lean on. For Jade, one of the most important aspects of living with and managing her type 1 Gaucher disease was finding other patients who faced similar challenges and understood her experience firsthand. Attending in-person events, specifically for those with Gaucher disease, helped her to truly feel a connection with the community and build her support network. This October, learn more about Gaucher disease, explore available resources and see how patients like Jade are creating supportive networks: https://lnkd.in/e9a9SmMr
Crohn's and Colitis Awareness Month This month, let’s raise awareness for those living with Crohn’s disease and ulcerative colitis, chronic conditions that impact countless lives daily. Through understanding and support, we can create a community that’s more informed and compassionate. Do you know someone affected by these conditions, or want to share more information? Join the conversation below! #CrohnsAndColitisAwareness #SupportAndAwareness #CommunityCare #HealthMatters
Crohn's and Colitis Awareness Month This month, let’s raise awareness for those living with Crohn’s disease and ulcerative colitis, chronic conditions that impact countless lives daily. Through understanding and support, we can create a community that’s more informed and compassionate. Do you know someone affected by these conditions, or want to share more information? Join the conversation below! #CrohnsAndColitisAwareness #SupportAndAwareness #CommunityCare #HealthMatters
Here are just a few of the rare diseases our community advocates for. 🧬 🦓 We're raising awareness, one rare disease story at a time, to offer hope to our community of rare disease warriors. 💙 Share which rare disease you advocate for and let's continue spreading awareness together! ✨ #BehindTheMystery #RareDiseaseAwareness #RareAdvocacy #RareDisease RareDiseaseAwareness #RareAdvocacy #RareDisease
Chronic Disease Awareness Day 🐝 🐝 Did you know? Chronic diseases account for 7 of the top 10 causes of death in the USA. What is today? Chronic Disease Day is led by the national nonprofit advocacy organization Good Days to promote: - chronic disease prevention and treatment - engage public supporters through virtual events and social media campaigns - advocate for Congressional funding for disease prevention and health promotion - and educate policymakers about legislative opportunities to enhance care access, reduce preventable diseases, and achieve broader healthcare equity. Learn more: https://www.chronicdiseaseday/ #ChronicDiseaseDay #wellness #healthequity #datadrivendecisions
Become #APOL1Aware and join American Kidney Fund for AMKD Awareness Day on April 30. Learn more about APOL1’s connection to kidney disease and spread the word: kidneyfund.org/APOL1aware #GeneChat
July 10 is #chronicdiseaseday. Together, we can advance chronic disease research and create a world where everyone has access to quality care and support. 💙 #ChronicDiseaseAwareness #HealthEquity #PatientAdvocacy #ResearchMatters
Vice Chairman at Cushman & Wakefield
3moIt truly is a devastating illness. I encourage you to learn about the illness and do what you can to support a cure.