Dermatology drugmaker Leo Pharma and the scattering of patients across the globe with rare skin disease generalized pustular psoriasis (GPP) are circling Aug. 13 on their calendars as the second annual GPP Awareness Day nears.
Leo and the National Psoriasis Foundation (NPF) are leading the charge in the annual awareness push to elevate the voices of patients with the rare disease and increase the visibility of the life-threatening skin condition, Leo’s VP of rare disease, Lukasz Jarzyna, explained in an interview with Fierce Pharma Marketing.
GPP impacts an estimated one in 10,000 people and is so rare that some patients have never met another person with their condition, Jarzyna said. The disease can cause intense inflammation that can be life-threatening and risk organ failure if left untreated during a flare, which is one thing that separates it from other types of psoriasis, including the more common plaque psoriasis.
However, the disease is commonly misdiagnosed as plaque psoriasis, meaning patients may miss out on the one specialized treatment available for the disease in Leo’s Spevigo. Muddying the waters further is the frequent occurrence of GPP in patients who have plaque psoriasis as well, leaving GPP “hiding” under the other disease while patients bounce around on different treatments without the correct diagnosis, Jarzyna explained.
Spevigo is the sole FDA-approved GPP treatment and was first brought to market by Boehringer Ingelheim in 2022 before the company turned it over to Leo last year under an exclusive global license and transfer agreement that made Leo responsible for further development and commercialization. Spevigo blocks the activation of the interleukin-36 (IL-36) receptor that hallmarks GPP and was made available in more than 40 countries by the time Leo acquired the med, with Boehringer Ingelheim pointing to Leo’s decades of sole dedication to skin conditions that makes it “exceptionally well-positioned to build on the strong foundation we’ve laid,” head of human pharma Shashank Deshpande commented at the time.
Leo hopes that through GPP Awareness Day and its other awareness and education efforts, doctors who may not be as familiar with the disease can be more prepared to identify, diagnose and support patients who present with the key symptoms, Jarzyna said. Along with supporting patients through the “diagnostic Odyssey” that is the journey of a rare disease diagnosis, Leo has been focusing on providing tools and resources to medical providers that could help the disease become more recognizable.
Outside disease flares, which can often be quickly diagnosed due to their physical presentation, inflammation may be hiding under the skin of patients. Living in between the unpredictable flare-ups of the chronic condition can leave patients suffering from anxiety and fear of another flare, Jarzyna said.
So far, Leo’s efforts in building awareness have led to a “significant increase” in diagnoses and treatment rates, according to Jarzyna. Still, the company realizes that many are still undiagnosed and untreated, leading to a significant focus on ensuring broad access for Spevigo. To further support its patients, Leo plans on continuing to build out online resources to connect patients to a community that can provide education tools and disease stories.
“It's important for us to be able to elevate the voices of those patients and make sure that the whole community understands what those patients are going through,” Jarzyna said. “Rare diseases are a challenge that we have set forward as Leo to address.”
Elsewhere in Leo’s rare disease pipeline, the company earlier this year shelled out $50 million for gene writing biotech Replay and its topical therapy candidate for rare genetic skin disorder dystrophic epidermolysis bullosa. With the new assets from Replay in hand as well as its own internal pipeline, Leo is working toward its goal of bringing solutions to medical dermatology areas where “there is still the biggest unmet need,” Jarzyna noted.
The Replay deal, in particular, followed CEO Christophe Bourdon’s January pledge to “add on other assets in the field of rare disease,” as he told Fierce Pharma at the 2026 J.P. Morgan Healthcare Conference.
“I want to be the first to spot unmet needs,” Bourdon said at the time. “I want to be the first one to spot which mechanism could make a difference and change the standard of care for patients.”