CLA Awareness Day: Shining a Light on Complex Lymphatic Anomalies

May 8, 2025

CLA Awareness Day: Shining a Light on Complex Lymphatic Anomalies

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CLA Awareness Day is a powerful moment for the Complex Lymphatic Anomaly (CLA) community—a time to come together, raise awareness, and advocate for change. For those living with a CLA, this day is more than a date on the calendar; it’s a call to action and a reminder of the urgent need for progress.

Around the world, over 300 million people are affected by rare diseases. Many of them face a long and difficult journey to diagnosis and care. For patients living with CLAs, these challenges are especially daunting. CLAs are chronic, progressive, and life-threatening conditions that are often misunderstood and under-researched. Despite their severity, they frequently go undiagnosed or misdiagnosed for years, delaying access to appropriate treatment and support.

The lack of scientific knowledge and quality information surrounding CLAs contributes to these delays and deepens the burden on families. Inequities in healthcare—based on geography, socioeconomic status, and awareness—mean that access to proper care is far from guaranteed. Many patients and families must travel long distances to see specialists, bear the weight of high medical costs, and navigate a healthcare system that often fails to recognize or understand their condition.

That’s why awareness days like this one are so important. CLA Awareness Day is an opportunity to shine a light on the reality of living with a rare and serious condition. It brings visibility to the struggles of patients and families, highlights the urgent need for research, and strengthens the call for consistent, high-quality care.

You can get involved on CLA Awareness Day by sharing our awareness graphics, updating your profile or cover photo, and liking, commenting on, and sharing our posts to help raise the voices of those affected by Complex Lymphatic Anomalies.

The LGDA is leading the way in addressing these challenges through its campaign to develop Consensus of Care Guidelines for CLAs. These guidelines are being created in collaboration with global experts and clinicians and are based on the latest research and clinical experience. Their goal is simple but powerful: to ensure that every patient receives the best possible care, regardless of where they live.

These guidelines will:

Support doctors in making faster, more accurate diagnoses
Create clear and consistent care pathways
Standardize treatment approaches across regions and clinics
Empower patients and families with greater confidence in their care journey

For the CLA community, this represents real hope—hope for timely diagnosis, effective treatment, and a better quality of life.

But progress requires more than medical guidelines. It demands global collaboration and an informed, united community. Rare disease research remains fragmented, and progress is often slow. By connecting researchers, clinicians, and advocates across borders, the rare disease community can accelerate breakthroughs and improve lives.

On CLA Awareness Day, the LGDA joins voices around the world to honor the strength and resilience of CLA warriors and their families. The organization reaffirms its commitment to driving change, raising awareness, and fighting for a future where no one faces this journey alone.

Because when the CLA community comes together—patients, families, advocates, and experts—they are stronger.

Join us on May 26th to raise awareness for CLAs. Download and share our graphics. Like, share and comment on our posts.

Feel free to download and use our graphics to help raise awareness.

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