Every patient matters. Every discovery counts.
February is Rare Disease Month and on Rare Disease Day (February 28), we honor the strength of the rare disease community and the urgency of advancing research, diagnosis and care.
Why Rare Diseases Matter
Rare diseases affect more than 300 million people worldwide, yet each individual condition often impacts only a small number of patients. That combination—global scale with individual rarity—creates significant challenges, including delayed diagnoses, limited treatment options and research funding, and difficulty accessing expert care.
For patients and their loved ones, these challenges are deeply personal. Their symptoms may be misunderstood or overlooked, answers can take years to uncover, and the path forward is often uncertain. Rare Disease Month and Rare Disease Day exist to shine a light on these realities and to remind the world that rare diseases deserve attention, urgency, and action.
Castleman Disease Is One of More Than 10,000 Rare Diseases, but for those living with it, the impact is anything but rare.
As a complex immune-related disorder involving abnormal lymph node growth and immune dysregulation, symptoms can vary widely and may resemble infections, autoimmune diseases, or cancers. As with many rare diseases, delayed diagnosis, limited treatment options, and uncertainty about the future are common experiences for patients and families.
At the Castleman Disease Collaborative Network (CDCN), we believe rare diseases demand extraordinary collaboration.
By bringing together patients, physicians, researchers, and data from around the world, the CDCN accelerates scientific discovery and improve cares faster than traditional research models allow. Our collaborative approach helps overcome the barriers that often slow progress in rare disease research and ensures that patient experiences help guide scientific priorities.
This Rare Disease Month, we honor:
- The patients and families navigating uncertainty with resilience and courage
- The physicians and researchers pushing science forward
- The supporters who make progress possible through generosity and belief
How You Can Celebrate Rare Disease Month & Rare Disease Day
You don’t need a large platform to make a meaningful impact. Here are a few ways you can help raise awareness and support the rare disease community this month and on Rare Disease Day:
Share a Story
Post on social media to honor a patient, loved one, physician, or researcher. If you feel comfortable, share your own Castleman disease journey or what you’ve learned about rare diseases. Tag us on Instagram @curecastleman and we will repost your story.
Post a Warrior Flex Photo
Share your Warrior Flex photo to social media and if you would like, include your story. Use #RareDiseaseDay #CDCN #CastlemanDisease #WarriorFlex #CureCastleman
Wear Awareness Colors
Zebra stripes are commonly associated with rare disease awareness. Wear your stripes or the color purple and invite friends, coworkers, or classmates to join you.
Educate Others
Take a few minutes to explain rare diseases—or Castleman disease—to your school, workplace, or community. Awareness can lead to earlier diagnosis and better care.
Support Research
Donate or fundraise to support research efforts that accelerate discoveries and improve treatments for Castleman disease and other rare diseases.
Donate Samples or Join the ACCELERATE Registry
Help us learn more about Castleman disease by donating your medical records to our global patient registry or blood samples to our biobank.
Connect Someone to CDCN
If you know someone searching for answers, help them find CDCN’s educational resources, patient support, and community.
Together, we are proving that when a community comes together, rare doesn’t mean alone—and it doesn’t mean impossible.