I am still waiting for more details from experts, but this is what I have so far.
"Since red blood cells do not have DNA, donating blood should be fine. White blood cells should not be donated as they contain the cells that can release Il-1 rapidly and in essence the patient who could get white blood cells could get a NOMID flare.
But practically I do not believe that a blood lab would take blood from a patient with NOMID, at least here (USA), volunteers who donate blood do not need a genetic diagnosis"
As far as if you wanted to have a blood transfusion, this is the info I have for now:
"I do not think that there will be an immunosuppressive effect if NOMID patients get blood either filtered or unfliltered."
NOMID is a form of CAPS, and the form that has the most severe inflammation. So it sounds like as far as the blood donation issue, you would be ok to receive blood, but donating your blood or other organs, or bone marrow would not be a good idea.
I will get back to you on this, as I get more feedback from the experts. This is a GREAT question! There is a bunch of experts at a conference in Europe discussing this right now, thanks to you.