The MPN Research Foundation in the US has written to the MPN AA, as well as many MPN patients and MPN organisations internationally, asking us to publicise this assessment (survey). They have advised us of the following.
“This assessment is designed to gain a deeper understanding of the real-world experiences, priorities, and challenges faced by individuals living with myeloproliferative neoplasms (MPNs) worldwide. Participation from patients across different countries and regions is essential to ensure that unmet needs are understood by region and reflected accurately in future research, education, and advocacy efforts.
About the 2026 Global MPN Unmet Needs Assessment
The goal of this assessment is to better understand current patient perspectives and to share key insights with the broader global MPN community.
The assessment explores patient experiences across the following core themes:
• MPN Diagnosis and Monitoring
• MPN Therapies
• MPN Clinical Trials
• MPN Symptoms and Conditions
• Access to Information and Resources
• Emotional Health and Quality of Life
It should take approximately 25 minutes to complete and is open now through March 18, 2026.
Why Global Participation Matters
Healthcare systems, access to specialists, treatment availability, and support resources can vary significantly across regions. By amplifying patient voices globally, we can better identify regional gaps, shared challenges, and opportunities for collaboration that support patients worldwide.
Assessment Details
- Survey link: https://www.tfaforms.com/5184100
- Open now through March 18, 2026
- Preliminary results will be shared with participants in late (US) summer 2026
- What this means: You will be able to see unmet needs specific to your region, helping you better understand regional challenges and opportunities for advocacy and support.
- All responses are confidential
- Names and email addresses are collected only to connect patients with relevant opportunities
To see how patient input has already informed education, advocacy, and research priorities, you may preview highlights from the previous assessment (in 2024( here:
https://mpnresearchfoundation.org/mpn-unmet-needs-assessment-preview/“
