Rare Disease Clinical Trials
Have you explored or participated in a clinical trial? What unique challenges do rare disease patients face when it comes to trials? Let this be a place to ask questions, vent, and hear from others.
I have cowdens with LD tumor and PTEN genetic defects. It us to rare so I have not found any trials
I see that Donna chimed in...I was assuming that you have accessed the search function at https://clinicaltrials.gov/.
Sorry that I didn't add this to my earlier reply.How are faring, in terms of the cancer concerns...have you been getting good monitoring?
Also, have you been able to find a disease-specific support group?
I can try to help you locate one online if you'd like.Hope you're having a good Monday,
Gina Miller,
Team Member, I just wanted to check back in with you and see how you are and if you were able to enroll in a study. -Warmly, Donna (Team Member)
