Share Your Voice, Shape the Future: New Survey Feature Launches on the MDS Exchange 

The MDS Foundation is excited to announce the launch of a new survey feature within the MDS Exchange, empowering community members to share their specific experiences in a safe, supportive space, while helping shape future care, resources, and research in myelodysplastic syndromes (MDS). 

We understand the challenges of navigating MDS and believe that every patient and caregiver’s experience matters. That’s why this new survey feature is designed to make it easy to share your thoughts—directly within the MDS Exchange platform—while feeling heard and supported. 

Why Participate in Surveys? 

By completing surveys, you’ll help the MDS Foundation better understand the community’s gaps, priorities, and unmet needs. Your insights will directly inform the development of future educational programs, advocacy initiatives, and support resources. 

Whether it’s about accessing care, understanding treatment, or managing daily life with MDS, your feedback helps ensure our efforts remain aligned with what matters most to you. 

A Safe Space to Be Heard 

The MDS Exchange was built to be more than just a discussion board, it’s a secure, welcoming environment where people affected by MDS can connect, learn, and share.  

This new survey feature continues that mission by providing users with a structured, private way to share their voice. All responses are anonymized and analyzed with care, helping transform community input into actionable insights—without compromising privacy. 

A Vision for Data-Driven Patient Support   

This survey feature represents another step forward in the MDS Foundation’s mission to elevate the patient voice and improve outcomes through connection and insight. By gathering real-world experiences directly from patients and caregivers, we are able to: 

• Identify gaps in care and support 
• Shape educational and research priorities 
• Develop inclusive, patient-informed programs 
• Uncover emerging trends and disparities 

How to Participate 

A new survey is now live and can be completed directly within the MDS Exchange platform. You’ll also find a selection of third-party surveys, facilitated by trusted collaborators, designed to help improve care and support for the MDS community. Simply log in with your existing credentials (or create an account), navigate to the survey section, and begin sharing your experience—it only takes a few minutes, but the impact could be long-lasting. 

Login to the MDS Exchange and complete the survey here.

Looking Ahead 

As we continue to expand the MDS Exchange, additional features like the survey tool will be introduced, offering new ways to connect, contribute, and drive meaningful change together. By participating, you help strengthen the MDS community and ensure every voice plays a role in shaping a better future.