UPA Story -The United Porphyrias Association (UPA), a registered 501(c)3 non-profit patient advocacy group

UPA Story

The United Porphyrias Association (UPA), a registered 501(c)3 non-profit patient advocacy group, was established in January 2022 by a team of patient advocates, expert physicians, and researchers who, together, recognized a pressing need for a patient advocacy organization primarily focused on advancing awareness, research, and therapies in the porphyrias. This group of diverse founders came together to create an organization powered by scientific and clinical expertise.

With a defined mission, a clear vision, and a name that signifies our belief — United Porphyrias is convinced that fostering collaboration among patients, caregivers, physicians, researchers, pharmaceutical partners, and regulators is essential to increasing awareness of the porphyrias, improving access to current treatments, and developing new therapies.

With the ongoing support of donors, the work of our talented staff and expert physicians, and a passion for improving the lives of patients with porphyria, our work has been a resounding success. We are proud to be recognized as the exclusive patient advocacy organization of the Porphyrias Consortium, the NIH-supported network of expert centers across the US.

The UPA Team

Understanding that no individual or group can accomplish this work alone, we have assembled a leadership team that leverages decades of scientific, business, government, and management experience. This team is equipped to take on the challenge of reducing the impact of the porphyrias on the lives of patients and their loved ones.

The UPA President, Kristen Wheeden, who previously worked as the Executive Director of the American Porphyria Foundation, brings operational and leadership experience to the organization. For her, the porphyrias are more than a job, and Kristen combines her professional capabilities with a personal mission to advance porphyria and rare disease awareness and therapies. Kristen is joined by a dedicated and passionate staff that brings non-profit, patient support, clinical research, and organizational experience to the UPA’s day-to-day endeavors.

In addition to the UPA’s professional team, three volunteer groups are critical to the UPA’s success:

  • An enthusiastic and committed Board of Directors provides governance, oversight, and direction to the UPA
  • A 22-member Scientific Advisory Board, comprised of the country’s leading porphyria experts, counsels the UPA on medical, scientific, and research topics to help the UPA best support patients and the physician community in their treatment of porphyria patients
  • A 15-member President’s Council, which includes patients and advocates representing all types of porphyria, advises the UPA to ensure the patient voice is central in all our efforts

Join us - Together we can change the future of porphyria!

What does our logo mean?

The UPA logo features a purple porphyrin molecule, representing the foundation of all porphyrias. The arrows symbolize our goal of advancing the understanding and treatment of porphyrias, and they also reflect our belief that the only direction from here is UP, a take on United Porphyrias that we use in programs and initiatives! The central "x" in the porphyrin molecule represents FECH (ferrochelatase), the final step in the heme biosynthetic pathway leading to the formation of a fully developed porphyrin molecule. In the UPA logo, we envision the "x" as the patient who remains at the core of all our endeavors.