SarcoidosisUK run a confidential telephone helpline. The calls are taken by an NHS nurse who has sarcoidosis.

People with sarcoidosis often find that they do not get the information and support they need and deserve from their GP or even specialist.

The SarcoidosisUK Nurse Helpline is run by nurses who have a superior knowledge and awareness of sarcoidosis. The helpline exists to provide anyone affected by sarcoidosis much needed information and support. You can have as much time as you need to talk through your situation with someone who understands what you're going through.

A call with the nurse should give you some reassurance and a better idea of what to expect, especially if you have recently been diagnosed. Anyone affected by sarcoidosis, including friends, families and caregivers, is welcome to schedule a call.

To schedule a call, please send us a quick email letting us know the best number for the nurse to call you on and how sarcoidosis is affecting you.


"I had a great experience with the SarcoidosisUK helpline and spoke to the most lovely woman. I felt like I could talk freely and I felt for the first time in 2 years that someone was listening to me. So helpful and caring.”

SarcoidosisUK Nurse Helpline Caller, October 2016

"I felt as though I had nowhere to turn because there is very little awareness and support for those suffering with sarcoidosis - it was very useful to speak with someone who understands life with the condition as well as having the professional expertise. Thank you”

SarcoidosisUK Nurse Helpline Caller, December 2016

"The helpline was great. There is not much help or information except the internet, so speaking to someone who understands and can answer questions was brilliant, thanks.”

SarcoidosisUK Nurse Helpline Caller, March 2017

"With this condition you can feel alone as its such a rare condition. It was so lovely to talk to some one who experienced the same condition and fully understood how you felt. She answered all my questions! A huge thank you!!!”

SarcoidosisUK Nurse Helpline Caller, August 2017

"The nurse was amazing, she put me at ease and just listened and answered all my worries. We were on the call for a while, I was going back and forth, and she just let me talk. Just what i needed - thank you!”

SarcoidosisUK Nurse Helpline Caller, January 2018