Does Social Justice Exist in Rare Disease? We Need Your Voice!
Patient Advocacy Groups Needed!
We want your help and input on ‘Does social justice exist in rare disease?’
We are collaborating with the Children’s Hospital of Eastern Ontario (CHEO) to conduct a global moderated Delphi study to build consensus and hear from all Rare Communities on their lived experiences in relation to social justice.
This research is being conducted as part of the Rare Diseases International-Lancet Commission on Rare Diseases, a landmark global initiative dedicated to generating evidence and equity-informed recommendations that are actionable worldwide to improve the lives of people living with rare conditions.
Participation in this moderated Delphi study is voluntary.
Applications expressing your PAG’s interest in participation does not guarantee selection for the study.
You may withdraw from the study at any time without consequence.
What is the RDI-Lancet Commission on Rare Disease?
The RDI-Lancet Commission on Rare Diseases is a global initiative dedicated to generating evidence and equity-informed recommendations to improve the visibility of rare diseases.
As part of the Commission, this study aims to:
- Identify barriers that people living with Rare Disease (PLWRD) face
- Understand how these barriers affect equitable opportunities to live well
- Explore how social justice can be achieved in rare disease communities
What is social justice?
Social justice is the concept of creating a society in which:
- all individuals have equitable access to opportunities and resources
- everyone is treated fairly and with dignity
- systemic inequalities are addressed
- benefits and burdens are distributed fairly
- participation, access, equity, and respect for diversity are emphasised.
Who can participate?
Representatives of a Patient Advocacy Group (PAG) will be requested to provide feedback on behalf of their community.
For the purposes of this study, a PAG is defined as:
- a non-profit group with majority leadership of those living with a rare disease or a close family member
- can be formally constituted (registered charities) or informal groups (local/online networks).
PAGs will be selected to participate across:
- jurisdictions
- rare diseases
- PAG structures
- other variables
What does participation involve?
Participation in the study will include:
- two to three online surveys (approximately 30 minutes each)
- one online consensus meeting (1 hour) between March and May 2026
Important: Only one individual from your organisation will be asked to respond on behalf of the group, not as an individual.
Are you interested in participating?
If yes, please complete this form so that we can send you more information about the study if selected.
For more information or any questions please get in contact with us at care4rare@cheo.on.ca
Please share this with your networks, Rare Communities or Patient Advocacy Groups. We want to hear from Rare Communities worldwide.
Further information
To learn more:
- Podcast: Why is being rare still a struggle for justice?
- Blog post: Dr Lucy McKay on rare disease advocacy
- Medscape Education: What Is The RDI-Lancet Commission For Rare Disease?
- RareRevolution Insider: A global vision for rare disease
Visit the RDI-Lancet Commission on Rare Disease LinkedIn and website.
