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 checked and see a couple that are recruiting for the PTEN genetic mutations: https://clinicaltrials.gov/search?cond=PTEN%20Gene%20Mutation and unfortunately, it doesn't look like any LD trials are currently recruiting, but you could check back. I hope that helps. - Warmly, Donna (Team Member) 
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
