Where to find "Calciphylaxis Care Teams" SC

Hi,
I'm reaching out and I'm desperately asking for any help/guidance as to how to help my 40 yr. old Daughter (SC) who has been trying to get help since August/2025 as to some kind of Pain Management Plan to help get ahead of her Calciphylaxis beginnings as she's now 3-mths in and living each day with pain. She is still suffering and I'm pleading for someone to help us. Yes she has her Nephrologist and she's had 5 deep puncture Biopsies, which now 1 has become an open lesion on her leg and we still can't get the required group of professionals to get together for her "Care Team". She just keeps getting told to go to the ER's in her area only for the Doc's to prescribe her Tylenol (which doesn't begin to touch the pain) and it's AMAZING how little the Nursing Profession knows about Calciphylaxis and how to put together a Care Team for a Patient.
Please any help/advise/guidance would be so much Thankful for your experience's with this Horrible Disease.... #GodsSpeed...