Apply to join a NICE working group for rare diseases

by | Dec 15, 2021

NICE is seeking 3 working group members to work on a short-life working group from January to March 2022!


The purpose of this group is to help advise on the implementation of the Summary of Information (SIP) for Patients at NICE.

This will consist of three areas of work:

1. To amend the international guides for patients and companies for use at NICE

2. To advise on how to evaluate the SIP

3. To help with communication and education around the SIP including for patient organisations and industry.

What is the SIP?

The SIP is a plain English summary of the company’s submission to NICE. The SIP has been used at the Scottish Medicines Consortium (SMC) for several years and they have now developed an international SIP template and guides collaboratively as part of an HTAi Patients and Citizens Interest multi-stakeholder project group.


What experience are they seeking?

They would like people from patient organisations or individual patient experts with previous experience of working at NICE, preferably in medicines appraisals who have provided written submissions to NICE.

They are looking for one of each of the following:

· 1 cancer

· 1 non-cancer

· 1 rare disease


They anticipate holding up to 5 meetings over Zoom during the 3 month period, starting with 2 in January (dates to be confirmed).

Additionally, they will ask for feedback on documents.

Further information and expressions of interest

For expressions of interest please use the form below, which includes the following information:

  • Contact details
  • Affiliation to patient organisation/s
  • Which condition area you cover (cancer, non-cancer or rare disease)
  • A brief summary of your involvement of NICE
  • A brief summary of any previous experience of the SIP or not (previous experience is not a pre-requisite)

Please send your expression of interest form to and get in touch if you have any further questions with the team at NICE.

Following the non-staff reimbursement policy, representatives from organisations will not be offered an honorarium for meetings, however individual patient experts will.


Deadline for applications is 5pm, Tuesday 4 January 2022