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Jan. 12, 2016

TOPIC: Featured News, Get Involved, Patients & Members

FDA Invites Patient Organizations to Organize Their Own Meetings on the PFDD Model

Posted by Mary Dunkle

When the Patient-Focused Drug Development (PFDD) Initiative was first announced as part of the 2012 PDUFA reauthorization, many patient organizations expressed concern that the initiative’s public meetings would focus on just 20 groups of diseases. However, FDA has now provided a pathway for extending the model to many other diseases.

In a blog published this week, Theresa Mullin, PhD, writes that FDA has found the PFDD public meetings to be very helpful, providing a first-hand understanding of the needs and wishes of patients. As a result, FDA is now inviting patients with diseases not covered by the original public meetings to organize their own, following the PFDD model.

It’s a great opportunity for patient organizations representing people with rare diseases to share their hopes, challenges and concerns directly with FDA. Interested groups can find more information about this on the FDA website and in the Federal Register posting.

One Response to “FDA Invites Patient Organizations to Organize Their Own Meetings on the PFDD Model”

  1. Annie Achee says:

    April 2, 2016 – “A MISSION THAT MATTERS WITH M D ANDERSON” in partnership with the National Leiomyosarcoma Foundation present a one day ( 9 am – 3 pm) patient education symposium for Leiomyosarcoma patients – a rare sarcoma subtype. Can this event be posted by NORD to alert patients . . .even other sarcoma patients can benefit from this program. For questions and registration: call Annie Achee 303 783-0924

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