Strengthening FTD Research with CureGRN

Connecting families affected by frontotemporal degeneration (FTD) with meaningful research opportunities is at the heart of the FTD Disorders Registry mission. That work is most powerful when it happens in partnership with trusted patient and family communities. We are proud to partner with CureGRN, also known as CureGRN – Uniting Progranulin Families, to help individuals and families impacted by progranulin-related FTD learn about research and understand how participation can drive progress.

As part of this partnership, the Registry team hosted an online presentation for the CureGRN community, creating space for open conversation about FTD research, data sharing, and the many ways families can stay informed and engaged. These virtual sessions are an important way to meet families where they are, answer questions in real time, and demystify what it means to take part in research.

Why partnerships like this matter

FTD is a complex and heterogeneous group of disorders, and advancing research depends on collaboration across researchers, advocacy organizations, and the families who live with these conditions every day. By working together, the Registry and CureGRN help ensure that:

• Families receive clear, accessible information about ongoing and future research opportunities
• Researchers can better understand participant interests, needs, and priorities
• Individuals living with FTD and their care partners see how their voices and data contribute to real-world impact

Through the Registry, participants can choose to be contacted about studies, surveys, and educational opportunities, while maintaining control over their information. Partner organizations like CureGRN play a critical role in helping families understand the value of these connections and feel confident engaging with research.

Learning from the CureGRN community

The online presentation with CureGRN sparked thoughtful discussion about the importance of data sharing and community engagement in rare disease research. As CureGRN shared following the event:

“The FTD Disorders Registry’s conversation with our CureGRN community highlighted how data sharing helps advance FTD research. It showed individuals living with FTD—and their families—how their participation directly supports awareness, advocacy, and education for a rare condition that is too often overlooked. Thank you AFTD Registry, CureGRN-Uniting Progranulin Families.”

We are grateful to the CureGRN community for their openness, insights, and continued commitment to advancing FTD research.

Looking ahead

Partnerships like this one help build a stronger, more connected research ecosystem—one that centers the experiences of individuals and families while supporting the scientific work needed to improve diagnosis, care, and future treatments. We look forward to continuing our collaboration with CureGRN and expanding outreach efforts that help more people connect with research opportunities that matter to them.

If you are part of a patient or advocacy community interested in learning more about the Registry or hosting a similar presentation, we welcome the opportunity to connect. Together, we can ensure that more voices are heard and that progress in FTD research continues to move forward.