blank
blank

Patient Partner Compensation Guidelines

1:1
"Patient partner" is an overarching term that includes individuals with lived experience, including patients, caregivers, family, and friends.

This document outlines IG’s compensation guidelines for patients and caregivers who contribute their time and expertise to IG’s efforts (e.g., committees, working groups) or for patients and caregivers who are invited by IG to attend and participate in specific events (e.g., launch events, workshops, and meetings). These guidelines were developed for individuals who wish to be compensated, recognizing that not all individuals will wish to be. Payment for expenses (e.g., travel) are not considered to be compensation and are reimbursed separately.

These guidelines are meant to help start a conversation between IG and patient partners about compensation. IG values flexibility, equity, and inclusion in its approach to patient partner compensation.

Acces this publication
4in-solidarity-649713_1920

Year of publication

2026

Author

IRSC CIHR

You might also be interested in

ECRD 2026

ECRD 2026 in Prague strengthens the push for a coordinated EU Action Plan on rare diseases

On 3–4 June, EURORDIS–Rare Diseases Europe and Orphanet convened the rare disease community at ECRD 2026 in Prague around a shared call for coordinated European action, including the forthcoming European Blueprint for Rare Diseases.
ERDERA Open Academy 2026

Open Academy x ERDERA Schools in Barcelona strengthen practical links between patient advocacy and rare disease research

The 2026 Open Academy x ERDERA Schools in Barcelona brought patient advocates and early-career researchers together for practical training on medicines development, translational research and meaningful participation in rare disease research.
Open Academy

Open Academy x ERDERA Schools return to Barcelona to strengthen rare disease research participation

From 25–28 May in Barcelona, the EURORDIS-led Open Academy x ERDERA Schools will bring patient advocates and early-career researchers together for four days of rare disease training, exchange and peer learning.
Captura de pantalla 2026-05-15 093018

NIHR Children and Young People Health Research Centre (NIHR HRC-PCH)

Children, Young People and Family Involvement and Engagement Strategy 2024-2029

ERDERA's

search form