United Porphyrias Association Launches, Will Advocate for Patients

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by Mary Chapman |

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The porphyria community has a new patient advocacy organization in the United Porphyrias Association (UPA), a newly launched nonprofit that seeks to advance disease awareness, as well as research and treatment development.

The Maryland-based organization will strive to enhance patients’ lives through improved diagnostics, porphyria management, and an emphasis on existing and emerging treatments. It is guided by physicians who specialize in porphyria, a group of genetic disorders caused by disruptions in the heme production cycle.

These specialists — including experts in hematology, hepatology, gastroenterology, neurology, and genetics — will serve on UPA’s scientific advisory board.

“As physicians at porphyria expert centers, we are pleased to support this new organization to help us advance awareness of the porphyrias and improve diagnosis and treatment,” Karl Anderson, MD, chair of UPA’s scientific advisory board, said in a press release emailed to Porphyria News.

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The organization’s newly named president is Kristen Wheeden, former executive director of the American Porphyria Foundation and executive board member of the American Porphyrias Expert Collaborative. Wheeden, who has an MBA from the George Washington University School of Business, also is a columnist for BioNews, which publishes Porphyria News.

“Porphyria is a rare disease that affects the skin or nervous system — sometimes both,” Wheeden said. “The common thread is that all Porphyrias trigger intense intolerable pain. There is little to relieve the pain and there is no cure.”

“There’s so much that patients and physicians don’t know about porphyria, and we’re working to change that,” she said.

The organization’s website offers access to medical information written and reviewed by UPA scientific advisory board members. It also offers patient resources that include a therapy safety database for acute hepatic porphyrias, a listing of where porphyria centers can be found in the U.S., and information about global porphyria support.

“As a caregiver to a child living with porphyria, our family knows first hand the significant challenges to disease management. We’re looking up and we feel hopeful with new treatments on the horizon,” Wheeden said.

To find a physician who specializes in porphyria, or to arrange a peer-to-peer consultation between a physician and a porphyria specialist, or for any other information or assistance, patients may contact the United Porphyrias Association at 800-868-1292 or by sending an email to [email protected]

The website also has resources for physicians and other healthcare professionals, including information about testing and diagnosis. It also will offer videos and information about upcoming scientific conferences and events.

“UP fills a significant need for a united patient-focused, expert-guided advocacy community in the U.S.,” Wheeden said. “Rare diseases, like porphyria, suffer from a lack of awareness, understanding, and frequently delayed diagnosis. We’re uniting with the international porphyria community, bringing  a network of expert and patients together to change this.”