Patients Castleman disease
Castleman disease: Would you like to join a patient organisation?
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Joined in 2020
Patients Castleman disease
Joined in 2020
Courtney_J
Community managerGood advisor
Courtney_J
Community manager
Last activity on 13/10/2022 at 16:47
Joined in 2020
1,280 comments posted | 16 in the Castleman disease Forum
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Hello everyone,
How are you today?
For the past year, Carenity has been collaborating with the CDCN (Castleman Disease Collaborative Network), the largest network dedicated to Castleman disease based in the US. The aim of this collaboration is to create and unite a true UK and European community around Castleman disease, allowing patients and their families to find support and access articles and testimonials related to this rare disease.
Given the rapid growth of the community on Carenity, we would like to take the next step in this project and help create a patient organisation!
The creation of an independent structure dedicated to Castleman disease would help to raise awareness and recognition of this condition, which is unfortunately still little known. The organisation would also enable its members to enter into partnerships with doctors and health institutions, centralise medical information, raise funds for research and contribute to and participate in clinical trials.
Do you think this is a good idea? Would you join a Castleman disease patient organisation? Would you be interested in participating in the creation of such an association with the Carenity's support?
@Dhagggart @MayaBee @emcd1951 @Justinw @SJT123 @Jenr87 @Hender65 @Ikeaaron @Bryan123 @JessicaAli @Mustang @jjmurry @Rzrbacknok @Jwalbornperales @Alice03 @mjkr1227 @Paddy123 @georgiana.em_gil @Lilly
Please feel free to share your thoughts and feelings in the comments below!
Take care,
Courtney