President's Council

The UPA is proud to engage patients, caregivers and advocates at a variety of levels to drive the activities and priorities of the UPA mission. Patients’ needs are at the core of our united effort.

Our President’s Council members are patients, caregivers, and advocates with a relationship to porphyria who partner to ensure the highest standard of patient-centered activities at the United Porphyrias Association. Our President’s Council was established in January 2022, meetings monthly, and is comprised of multiple working groups.

UPA President’s Council benefits our organization and community in many ways, including:

  • Establishing patients as true partners to drive UPA awareness, research and therapies
  • Offering patients the opportunity to actively direct the activities of the UPA
  • Ensuring a safe venue for patients to provide feedback on UPA programs and activities
  • Facilitating discussions about porphyria at UPA and in our community
  • Serving as a resource to leadership, colleagues and shared governance within UPA

President’s Council Mission

Ensuring the voice of the patients is heard and their influence is felt in a meaningful way.

President’s Council Vision

To keep patients at the forefront of all UPA work.

UPA strives to:

  • Provide and communicate the unique perspective of the patient to the clinical leaders and staff at UPA
  • Provide advice, consultation, evaluation and recommendations, when solicited, regarding programs, educational efforts and operational initiatives at UPA