Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment and Research

Many rare cancers are difficult to diagnose and treatment options are limited. Patients living with, or at risk of, a rare cancer often encounter obstacles accessing appropriate screening, referrals, counseling, effective therapies, and research opportunities. At the same time, clinicians and rare cancer researchers are challenged by complex health conditions, limited access to diagnostic tools, sparse clinical study data and small research populations. NORD is here to help patients and clinicians alike address these gaps and break down barriers.

[staciaLouisepuryear]

I have rare Cancers and it's hereditary and the one that doesn't have the genetic mutation has a lot of the rare cancers I had nine Specialists and now I'm ready for all my checkups but I had the switch in insurances and one of my last things was a hysterectomy and then covid so I still have stuff going on that I can't get anyone to look at and they all want to start at the beginning at like ABC instead of being being in that one to 2% or less of having the rare so you can't just do it through diet or something what would be a good way to ask a doctor to look into it that way or find a doctor to look at me so I don't die of skin cancer after I had 14 surgeries for the other ones my younger sister which is 12 1/2 years younger than me just went in with it it's in about a four to five but they started with chemo and and my dad just went in last night so we almost have all the generations in for the colorectal we have a check to mutation but we have a lot of cancer in the other side too so I appreciate your guys's information very much I would like someone like you or Dave's or whoever knows as much as you do about looking at what I have because I've had it for a long time too like I think I actually had maybe juvenile because some of my symptoms come up like you usually only found in kids or dog symptoms come up but we grew all our food made everything from scratch Aid organic and I always played Sports that gets you about 32 and then after that the food's not going to help everywhere I had trauma where it falls is where I am and now I'm bone on bone and all my joints and it's hard for my body to go it's shutting down like my so I would like to be checked cuz all my checks are ready like I'm supposed to get colonoscopy and everything so is there a way to go to a teaching hospital for you know like down in Oakland for children's center or UCSF or something that?