What is World Castleman Disease Day?

The First Annual World Castleman Disease Day took place on July 23, 2018! It was a wonderful opportunity for Castleman disease advocates worldwide - from Castleman disease patients and loved ones to physicians and researchers - to come together in the fight against Castleman disease to continue to support patients currently living with Castleman disease and to remember those patients who we have lost. Though Castleman disease was discovered more than 60 years ago, there is very little known and no cure. It's as common as ALS and affects individuals of all ages. Simply, it's the most deadly, most common disease that you've never heard of. We want to change that! This year, 2018, marked the first ever World Castleman Disease Day, and it was a huge success!

Check out the PECO Crown Lights salute to World #CDday here!

Why is World Castleman Disease Day important?

World Castleman Disease Day will continue to be the one day a year for patients, loved ones, physicians, and researchers across the world to come together and unite in the fight against Castleman disease, a day to show solidarity and our commitment to taking down this disease. 

What should I do on World Castleman Disease Day?

There was a wide range of ways to get involved - from wearing blue to hosting a fundraiser in your hometown - and the CDCN is here to help!

  1. Donate: donate or help raise funds to accelerate the high impact Castleman disease research that the CDCN is driving forward in the quest for a cure - https://www.cdcn.org/donate
  2. Share: share your story! Share with family and friends - engage others in the fight against Castleman disease!
  3. Wear blue and a CDCN wristband if you have one (email mileva@castlemannetwork.org to order one)
  4. Post a photo of yourself in a Warrior Stance and your Castleman disease story on social media: We encourage you to share your photo and story with #CDday #CastlemanWarrior. We have also created some content that you can copy or add! See below for more.
  5. Email your friends and family: Tell them about CD and ask them to donate and share with others.
  6. Hold a fundraiser in your hometown: Help raise funds and awareness with events like a bake sale at your school or a percentage night with a local business. Email info@castlemannetwork.org for materials and assistance.
  7. Patients: make sure you've completed the steps on the "Castleman Checklist": Click here to make sure you've completed those steps.

What can I post and share?

We encouraged everyone to share their Castleman disease story with #CDday but if you need some inspiration, see below for a few Fast Facts that you can include in your #CDday posts!

  • Castleman disease - the most deadly, most common disease that you've never heard of. Help us change that! Visit cdcn.org/donate #CDday
  • Castleman disease was first discovered in 1954, but it is still so poorly understood and deadly because so little research has been done. Help support groundbreaking research. Visit cdcn.org/donate #CDday
  • Despite significant progress in Castleman disease research, there is still no known cause or cure, we need your help! Visit cdcn.org/donate #CDday
  • Castleman disease affects individuals of all ages, I was first diagnosed when I was [insert your age] years old. Help patients like me! Visit cdcn.org/donate #CDday
  • In 2018, Castleman disease patients and loved ones have raised approximately $10,000 for research. We need your help to raise more funds to help find a cure! Visit cdcn.org/donate #CDday
  • There are approximately 6,500 to 7,700 new cases of Castleman disease diagnosed every year in the US. Visit cdcn.org/donate #CDday

Also, feel free to share this video: https://youtu.be/9PcJscr5xT8 which tells the story of how the CDCN is working to turn promising research into permanent cures!

Or share this video from the TODAY Show about Castleman disease and the CDCN: https://www.today.com/video/doctor-with-rare-disease-racing-to-save-his-own-life-1136809027930

What about after World Castleman Disease Day?

Supporting our Castleman Disease Warriors and fighting to take down Castleman disease is going to take more than one day but you can continue to help throughout the year! Get involved and stay in the know by signing up for our newsletter, on the top right of this page, to stay up to date on current research and patient stories. Follow us on Facebook, Instagram, and Twitter for day-to-day #CastlemanWarrior posts. Apply to be a volunteer here (living in the Philadelphia area not required)! 

You can always support by donating here. Your donations will help to accelerate high impact, life-saving Castleman disease research!