Rare Disease Day 2025 – Join Us in Raising Awareness!
Unseen Struggles: The Reality of Rare Diseases
Welcome to our Rare Disease Day page as we come together to commemorate this important day on February 28th, the rarest day of the year, symbolizing the unique challenges faced by the rare disease community. Explore downloadable Facebook graphics, an insightful one-minute video, the inspiring journey of Scott Groves, and the official Rare Disease Day video. Highlight your calendar for our Zoom presentation and the grand reopening of our Arachnoiditis Patient Registry. Together, we celebrate strength, raise awareness, and foster hope.
Rare Disease Day Social Media Graphics
Show your support for Rare Disease Day with our custom social media graphics! Download our specially designed Facebook cover and profile photos to spread awareness and show solidarity with the rare disease community. It's a simple yet powerful way to make a difference. Click to view and download your favorites, and don't forget to share them with your network!
*Be sure to click on the arrow(s) to scroll through the images on a laptop/computer or click "LOAD MORE" on a mobile device. Once you click on the graphic of your choice, you'll be able to download the image.
Join Us for a Rare Disease Day Presentation and Discussion
Rare Disease Day is an important global movement dedicated to raising awareness for rare diseases and the millions of people affected by them. This year, we invite you to stand with us in supporting the Arachnoiditis community and advocating for improved research, education, and support.
ACMCRN’s Rare Disease Day Presentation
Join us for a special live event as part of Rare Disease Day 2025! We’ll discuss the latest developments in Arachnoiditis research, patient advocacy efforts, and how you can get involved in making a difference.
Date: Friday, February 28, 2025
Time: 7:00 - 8:30 PM EST
Zoom Link: Join Here
📞 Meeting ID: 889 7467 9836
What We’ll Cover:
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Key advancements in Arachnoiditis research and what they mean for patients
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ACMCRN’s 2025 goals for patient advocacy & peer support
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Ways to get involved in future projects and initiatives
FACES OF ARACHNOIDITIS STORY
Meet Scott Groves, our Faces of Arachnoiditis Story. Scott was diagnosed with Arachnoiditis in 2008 following a discectomy and epidural steroid injections. A subsequent surgery in 2009 left him unable to walk, but through intensive rehabilitation, he regained mobility by 2015. Now, he dedicates his time to educating and supporting others, sharing neuroscience-based techniques that have helped him reclaim his life.
As part of his advocacy, Scott leads the Hack Your Brain, Hack Your Pain Zoom peer support meetings, where he teaches strategies for rewiring the brain, improving movement, and breaking free from pain cycles.
🔹 Join Scott’s Weekly Session: Hack Your Brain, Hack Your Pain – Zoom Link
Fridays at 7:00PM EST
🔹 Read Scott’s Story: Faces of Arachnoiditis – Scott Groves
Scott’s journey is a testament to resilience and the power of innovative pain management approaches.
Shop for a Cause
Join us in making a difference this Rare Disease Day by visiting our fundraising store. Here, you'll find an exclusive collection of Rare Disease Day tees and hoodies, along with a variety of fundraising merchandise carefully selected to support our cause. Each purchase not only raises awareness but also contributes directly to vital research and support initiatives for those affected by rare diseases such as Arachnoiditis/ Explore our selection today and stand with us in our fight against rare diseases.
Check out our video presentation "Harnessing AI and Machine-Learning Platforms in Rare Disease: Living with Arachnoiditis" narrated by ACMCRN's Dr. Ishna Singh, MD, offers a deep dive into Arachnoiditis. It includes historical context, patient data analysis, and the role of AI in research, aiming towards treatments and cures. This presentation is a must-see for insights into combating this rare condition through innovative technology.
Watch the Official Rare Disease Day 2025 Video
The Rare Disease Day 2025 video showcases the experiences of over 300 million people globally affected by rare diseases. It features 80 stories from individuals in countries ranging from Argentina to Italy and Bahrain to India, highlighting the diversity within the rare disease community. Participants shared their personal journeys with various conditions, including rare cancers and undiagnosed diseases. Translated into 60 languages and shared by 72 National Alliance partners, this video amplifies these powerful stories, encouraging viewers to share it with #RareDiseaseDay.