Patients Castleman disease
What is your Castleman story?
- 15 views
- 0 support
- 2 comments
All comments
Close all
See the responses
Hide the responses
Patients Castleman disease
Close all
See the responses
Hide the responses
Courtney_J
Community managerGood advisor
Courtney_J
Community manager
Last activity on 08/08/2022 at 11:09 AM
Joined in 2020
1,340 comments posted | 5 in the Castleman disease Forum
6 of their responses were helpful to members
Rewards
Good Advisor
Contributor
Messenger
Explorer
Friend
Hi @RhettB,
I’m so sorry to see that you’re connected to Castleman disease through being a member of this CD group here in Carenity. I am the mother of a Castleman patient, and the Chief patient officer for the Castleman Disease Collaborative Network (CDCN). I wanted to make sure to reach out, so you know there is a team of people supporting you through the Castleman Disease Collaborative Network.
Have you had the opportunity to join the CDCN patient/loved one community? This is an amazing resource: https://cdcn.org/patients-loved-ones/patient-login/ where you can gain access to publications, resources to help you better understand your disease, and the most up to date information on our lifesaving research.
We would love for you to consider joining our registry or giving a blood sample for research to improve understanding of this disease. Visit www.CDCN.org/accelerate or email castlebank@uphs.upenn.edu if you’d like more information.
And finally, I am always here to help you!! As Chief Patient and Development Officer for the CDCN, I’m here to support all our patients and their loved ones throughout their battle!
Best Wishes,
Mileva