Patients Castleman disease
Castleman disease: Would you like to join a patient organisation?
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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!
@Courtney_J This could be interesting. Would you have meetings in person or would it be more online? I'd be interested to meet others in the UK with CD.
Im from the 𝐔𝐊 .I was diagnosed with IMCD last nov 2020. I would love to be involved in this .
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