RDI Strategy 2030 - Members Survey

Thank you for contributing to the development of the RDI Strategy 2030. As a valued RDI member, your perspective will help ensure that RDI’s refined strategy aligns with global health priorities, adds value to shared initiatives, and builds on trusted collaboration. Your input will strengthen our relevance, effectiveness, and ability to drive collective impact for persons living with a rare disease worldwide.

The survey should take only 5-10 minutes to complete.

Hay una versión en español de la encuesta aquí.

Before completing the survey, we invite you to review the current RDI Impact Strategy here.

Please complete by Friday, September 26th. Thank you for your invaluable contribution.

Alexandra Heumber Perry

CEO, RDI

Survey responses will be aggregated and only shared anonymized. Personal identification will be used for follow-up questions and clarifications only.

Section 1 - About Your Organization

Name

First NameLast Name

Your Organization

Your role/title

Size of your organization (in individual members)

Please choose the region(s) where your organization is based or most active:

How satisfied are you with the progress RDI achieved towards its mission and aim in the past 2 years?

1 is Not Satisfied, 5 is Extremely Satisfied

Section 2 - Engagement

How would you describe your organization's level of engagement with RDI to date? (please select one)

Are there any ways that you would like to be more involved? (Select all that apply)

Section 3 - Strategic Priorities for 2026 - 2030

In your opinion, what should RDI's top 3 priorities be in the next 5 years?

How important are the following strategic themes for RDI?

Rows	Not important at all	Slightly important	Somewhat important	Very important	Extremely important
Advocacy at WHO/UN Level
Supporting implementation of the WHA Global Action Plan on Rare Diseases
Member Capacity Building
Youth leadership development
Data/Registries Collaboration
Raising Global Awareness
Sustainable Funding to Increase Access to Care

Is there anything that RDI is not currently focusing on that should be a priority? Are there specific gaps or needs in the rare disease space that you think RDI is well-placed to address?

How could RDI's strategies better align with your organization's mission or goals?

Section 4 - Implementation and Impact

What would success for RDI look like in 2030 look like, from your perspective ?

How can RDI better support your organization's goals?

What challenges, if any, do you see for implementing the Global Action Plan on Rare Diseases (GAPRD) in your country or region?

Section 5 - Final Feedback

Do you have any additional comments, advice, or recommendations for RDI as it develops its strategy?

Would you be willing to participate in further consultation (e.g., interview, workshop?)

Yes (please provide contact details)

RDI 2030 STRATEGY