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Rare Disease Day 2024

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 29th, 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 15-year-old Emmalyn Freeze, and the official Rare Disease Day video. Highlight your calendar for our Zoom presentation and the revealing of ACMCRN study results by Dr. Ishna Singh. 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

Join us for a landmark Rare Disease Day 2024 presentation and celebration, hosted by Lori Verton with ACMCRN on Zoom! 

When: February 29, 2024, at 07:00 PM Eastern Time (US and Canada)

Where: Your home, via Zoom! Join us for an enlightening session where we delve into groundbreaking research and insights into Arachnoiditis. With data from over 1250 participants, our discussion will cover treatment attempts, aggravating factors, symptoms, and much more.

Highlights include:
- A deep dive into our poster abstract and the significant findings from our extensive arachnoiditis data collection.
- A showcase of our video presentation from medical conventions, spotlighting the impactful research we're doing.
- Exclusive insights into the launch of our new International Arachnoiditis Patient Registry and its pivotal role in medical recognition and research advancement.
- The transformative role of Artificial Intelligence in our journey towards a cure.
- An open discussion on the daily challenges faced by those living with arachnoiditis and other rare diseases.

This is an unparalleled opportunity to be at the forefront of arachnoiditis research and advocacy. Whether you're affected by arachnoiditis, a supporter, or a medical professional, your presence will contribute to a wider understanding and recognition of rare diseases.

How to Join:

🔗 Join Zoom Meeting

Meeting ID: 655 140 1862


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Meeting ID: 655 140 1862

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Let's make Rare Disease Day 2024 a turning point in the fight against Arachnoiditis and other rare diseases. Your voice, your presence, can make a difference.

Emmalyn's Journey

Meet Emmalyn, our Faces of Arachnoiditis featured story. Emmalyn has several rare diseases, including pseudomeningocele, Adhesive Arachnoiditis, and Ehler's Danlos Syndrome (EDS). Emmalyn has had over 51 brain and spine surgeries which began with a Chiari Decompression at age 3.

Emmalyn's story is so very important because of the many mistakes that were made in her care and the medical community owes it to her to learn the lessons from it and we owe it to her to spread awareness of rare diseases. Click on the button below to read Emmalyn's story.

Meet Emmalyn

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.

Rare Disease Day Official Video

The Rare Disease Day 2024 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.

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