toll-free patient services line to help transplant candidates

[okarol]

The United Network for Organ Sharing (UNOS)*  provides a toll-free patient services line to help transplant candidates, recipients and family members understand organ allocation practices and transplantation data.  You may also call this number to discuss a problem you may be experiencing with your transplant center or the transplantation system in general. The toll-free patient services line number is:
 1-888-894-6361.   
 
*UNOS is a non-profit scientific and educational organization that administers the nation's only Organ Procurement and Transplantation Network (OPTN) established by the US Congress in 1984.  Though the OPTN, UNOS:
 
1) collects and manages data about every transplant in the US
2)facilitates the organ matching and placement process
3) brings together medical professionals, transplant recipients and donor families to develop organ transplantation policy.
 
You can visit them at www.unos.org or www.transplantliving.org     
 
 
Catherine Paykin, MSSW
Transplant Programs Director
National Kidney Foundation
30 E. 33rd St. New York, NY 10016
800/622-9010x144
212/889-2210 x144
cathyp@kidney.org

[Rerun]

I sure wish I would have had that phone number when they weren't going to work me up because I had plans to move (someday). 

I'm not sure what I said in my ROYAL FIT that made them change their mind, but they did work me up and I'm on the list.  (They probably just told me that!)   

[angela515]

When you get put on the list they provide you with an official letter saying so. 

[okarol]

The United Network for Organ Sharing (UNOS)*  provides a toll-free patient services line to help transplant candidates, recipients and family members understand organ allocation practices and transplantation data.  You may also call this number to discuss a problem you may be experiencing with your transplant center or the transplantation system in general. The toll-free patient services line number is:
 1-888-894-6361.   
 

UPDATE:
Beginning February 15, 2007, transplant centers must inform candidates of this service by including this phone number in the written notification sent when a candidate is added to the waiting list, a candidate is removed from the waiting list for reasons other than transplant or death, or when the transplant evaluation has been completed and a patient will not be placed on the waiting list. Transplant centers are also required to notify currently listed candidates about the availability of the patient services line. To read the exact language approved by the OPTN/UNOS Board of Directors at its December 2006 meeting, please refer to OPTN Bylaws Appendix B, Section II “Transplant Hospitals,” “Patient Notification.”
http://www.optn.org/PoliciesandBylaws2/byLaws/pdfs/bylaw_166.pdf

[okarol]