The U.S. Food and Drug Administration (FDA) reports that the in-person registration for their April 29 public meeting “Patient Perspectives on the Impact of Rare Diseases” is full. However, interested persons can still register to attend via webcast. In addition, the FDA invites those interested in attending in-person to join the waitlist.

The FDA reviews new medications and medical devices to determine whether they are safe and effective before they are sold. This meeting is a unique opportunity for individuals with PH to share their experience of living with a rare disease by responding to questions about symptom management, what they would most like from a new medication and what therapy risks most concern them.

Webinar participants and audience members will also have the opportunity to submit questions and comments.  Learn more and register.

For more information, contact Advocacy@PHAssociation.org or 301-565-3004 x749.