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:
Ensuring the voice of the patients is heard and their influence is felt in a meaningful way.
To keep patients at the forefront of all UPA work.
UPA strives to: