We are thrilled to announce that Acromegaly will be the focus of a PFDD (Patient-Focused Drug Development) meeting sponsored by Acromegaly Community Inc., a patient support organization based in the US. The meeting will take place on April 28, 2020, in Hyattsville, MD.
In 2012 the US Food and Drug Administration began conducting the Patient-Focused Drug Development initiative to gain more understanding of the patient perspective on specific diseases and the available treatments. In a recent press release, the FDA described these meetings as unique in their ability to engage patients and elicit their perspectives on two topic areas: (1) the most significant symptoms of their condition and the impact of the disease on daily life; and, (2) their current approaches to treatment.
Jill Sisco, president of the Acromegaly Community, tells me this meeting will advance the Acromegaly Community’s mission to address the unique needs and challenges of acromegaly patients and their families. “It will bring together members of the acromegaly stakeholder community of patients, family members, partner patient advocacy groups, academic investigators, clinicians, industry partners, and government agency colleagues to gain a deeper understanding of the symptoms and burdens of acromegaly in daily life, as well as the unmet needs of the community”, she said. “It took a considerable effort to get this initiative approved moving and accepted by the FDA. We are thrilled to be able to make this meeting available to patients,” she added.
Patients are encouraged to attend. According to Jill Sisco, there is space for about 45 patients that are willing to make a 5-minute public statement regarding their experiences and opinions with the disease. To get more information on travel expenses, meeting details and logistics, and how to participate in discussion panels, please contact For those unable to attend, the meeting will be streamed live online – please stay tuned for more details on this.
“We are pleased to be a part of this effort and help spread the word about this groundbreaking, significant step for acromegaly patients,” said Pituitary World News cofounder JD Faccinetti, who will participate in a discussion panel.
From 2012 to 2017, the FDA conducted 24 disease-specific patient-focused drug development (PFDD) meetings. The lessons learned include but are not limited to specific experiences that matter most to patients, patient perspectives on meaningful treatment benefits, and how patients want to be engaged in the drug development process. If you’d like to learn more about these meetings, .
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