Why PPA Spoke Up on U.S. Federal Research Grant Policy
This summer, PPA submitted a formal comment to the Office of Management and Budget opposing several provisions in a proposed rule that would change how federal biomedical research grants are administered — including reduced appeal protections for terminated research awards, a diminished role for independent scientific merit review, and new restrictions on the conference travel and professional collaboration that connect PPGL researchers worldwide. We chose to advocate because PPGL’s small, highly specialized research community — fewer than 20 Centers of Excellence worldwide — depends on exactly the kind of cross-institution and cross-border collaboration this rule would make harder to fund. Read our full comment letter here.Pheo Para Alliance OMB Comment_20260713
Advocate for the Time You Deserve
Your relationship with your PPGL specialist matters — and so does having enough time to make it meaningful. PPA has developed a template letter that you can send directly to your hospital’s CEO to advocate for adequate appointment time with your Pheo Para care team. This disease is complex, the stakes are high, and patients deserve more than a rushed visit. Whether you use it yourself or share it with someone who needs it, this letter is a tool for every patient, caregiver, and advocate in our community.