When 304 people, including 128 living with acromegaly, gather to talk about the disease, good things can happen. 

In January 2021, the Acromegaly Community, a US-based patient advocacy organization, organized and participated in an externally lead patient focus drug development meeting. The EL-PFDD initiative is a Food and Drug Administration (FDA) effort to systematically obtain the patient perspective to inform and impact new drug and therapies approval decisions. These meetings give the FDA, and other vital stakeholders, including drug developers, health care providers, federal partners, families, caregivers, and patient advocates, an opportunity to hear directly from a group of patients.

The report from that meeting is now available and can be downloaded here.

While the report is highly beneficial in providing a broad understanding of these patients’ perspectives, it would not be accurate to conclude that these insights and comments represent all acromegaly patients.

We encourage you to read the report and add your voice by sending us your comments.  Your experiences with acromegaly and involvement with the community are critical to the continuing understanding of the wants and needs of patients.

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