Want to view the page below in a different language?

Every year, on the last day of February, the global community comes together to recognize Rare Disease Day—a vital initiative that highlights the challenges faced by individuals living with rare conditions. On February 28, 2025, the Erdheim-Chester Disease Global Alliance (ECDGA) is proud to join this worldwide movement to raise awareness about Erdheim-Chester Disease (ECD) and the urgent need for greater research, diagnosis, and treatment advancements.

ECD is an ultra-rare blood cancer that affects multiple organs, including the bones, heart, brain, and kidneys. Due to its rarity, many patients endure years of misdiagnosis before receiving the correct identification and care. This year, Rare Disease Day is an opportunity for the ECD community to come together, share their stories, and advocate for change.

How Can You Help Raise Awareness?

1. Share Your Story – Personal experiences are powerful. By sharing stories of those affected by ECD, we can help others understand the challenges of living with a rare disease and encourage early diagnosis.
2. Engage on Social Media – Use Rare Disease Day 2025 as a platform to post about ECD, using official hashtags and tagging advocacy organizations to expand our reach.
3. Educate and Inform – Encourage friends, family, and healthcare professionals to learn more about ECD by directing them to the ECDGA website and Rare Disease Day resources.
4. Support Research and Fundraising – Donations and research funding are critical for developing new treatments. Consider supporting ECDGA’s initiatives to help advance medical understanding of ECD.
5. Wear Zebra Stripes or Teal and Navy – Many rare disease organizations use the zebra as a symbol of rarity, while ECDGA’s colors of teal and navy represent hope and unity within our community.

Be a Voice for the ECD Community

Rare Disease Day is more than just a date on the calendar—it’s a chance to bring global attention to diseases like ECD that often go unnoticed. By taking action, we can foster understanding, drive research efforts, and ensure that no one faces ECD alone.

Join us on February 28, 2025, to shine a light on Erdheim-Chester Disease. Visit ECDGA’s website and Rare Disease Day’s official page to learn more and get involved!