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May 24 2024

Complex Lymphatic Anomalies Awareness Day on May 26

CLA Awareness Day

We are proud to join the global community in celebrating Complex Lymphatic Anomalies (CLA) Awareness Day on May 26. This special day is all about raising awareness for CLAs, rare diseases that deeply affect the lives of patients and their families. This day is to share inspiring stories, highlight the challenges faced by those with CLAs, and stress the importance of ongoing research and better treatments.

CLAs are not only rare but also often misunderstood and misdiagnosed. Raising awareness is crucial for making a change. By informing people about CLAs, we can support research, speed up diagnosis, and build a more understanding community. Awareness also empowers patients and their families, giving them a platform to share their stories and advocate for their needs.


How to get involved

Social media is a powerful tool to spread the message and reach people around the world. Here are some simple ways you can participate this CLA Awareness Day:

  • Share Your Story
    If you or someone you know is affected by CLAs, share your journey. Talk about the challenges and victories you’ve experienced. Use hashtags like #CLAAwarenessDay and #ComplexLymphaticAnomalies to connect with others and spread awareness.
  • Post Educational Content
    Help educate others by sharing facts and information about CLAs. Post infographics explaining what CLAs are, their signs and symptoms, and why research is important. Educating the public helps clear up misunderstandings and shows why specialized care and support are needed.
  • Use Social Media Images
    To make it easy for you to join in, the LGD Alliance has created a series of eye-catching social media images. These images are designed to grab attention and share key messages about CLAs. Download your favorite image and share it on your social media profiles with a personal message or the provided information. Don’t forget to use the hashtags #CLAAwarenessDay and #ComplexLymphaticAnomalies. You can find the images here.
  • Share Interesting Facts
    Post interesting facts about CLAs with your followers. These facts not only inform but also encourage engagement and personal connection. For example: “Did you know that CLA can affect anyone, at any age?” Here are some more facts you can share:

    • Almost all CLAs are caused by gene changes that occur in specific body locations, not usually inherited from parents.
    • A “flare” in CLA is when there is an increase in disease symptoms, like pain.
    • Most CLA patients have widespread disease affecting multiple tissues that cannot be completely removed by surgery.
  • Share Messages of Support
    Post messages from doctors, researchers, or community leaders involved in CLA care. Their voices add credibility and urgency to our cause.

Why your voice matters

Every post, share, and like helps build a stronger community dedicated to CLAs. By participating in CLA Awareness Day through social media, you help ensure that the conversation about these rare diseases reaches more people. This collective effort can lead to real changes in funding, research, and public understanding.

Learn More About VASCERN’s Vascular Anomalies Working Group

At VASCERN, our Vascular Anomalies Working Group is dedicated to improving the care and understanding of vascular anomalies including CLAs. You can learn more about their important work and find resources on their page here.

Join us on May 26 to help change lives and spread hope. Your involvement could make a big difference for someone living with CLAs.

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