PARTNERING TO COMBAT RARE DISEASES

Those who suffer from the rare skin diseases generalized pustular psoriasis (GPP) and palmoplantar pustulosis (PPP) experience physical and mental pain. Boehringer Ingelheim is currently doing research on a substance with the goal of improving these patients’ quality of life.

Brandon has suffered from the rare auto-inflammatory skin disease generalized pustular psoriasis (GPP) ever since his infancy. He particularly struggled with the condition during his childhood: “People didn’t accept me because I looked different,” he recalls. Whenever he had a bout of the disease, his skin would be covered with painful pustules. Even today, the disease still has a firm hold on him. “When I suffer a bout, I feel like I am freezing on the inside, but my skin is burning.”

Fever, muscle weakness and an inflamed rash are the typical symptoms of GPP as well as the related disease palmoplantar pustulosis (PPP). With GPP, the entire body is covered with pustules, while PPP affects the hands and feet in particular. Sufferers therefore have difficulty walking and grasping things. If the pustules become inflamed, this can even lead to sepsis in the worst-case scenario. Patients urgently require a medicine, but no treatment options are currently available outside of Japan.

Boehringer Ingelheim is now researching a substance with the goal of improving these patients’ quality of life. It is currently undergoing testing in several studies. These have shown initial promise: The potential medicine is being explored both intravenously, as well as at a later date, subcutaneously, with the goal of achieving rapid efficacy. It is the company’s goal to bring this medicine to patients as fast as possible.

A key aspect of bringing improved patient outcomes is to ensure close cooperation with patient organizations, such as the National Psoriasis Foundation (NPF). Partners such as the NPF are of vital importance to patients, given their direct contact with them. Even doctors are frequently unaware of GPP and PPP, as only between one and nine persons out of every million suffer from them. Boehringer Ingelheim is precisely for this reason facing up to this challenge – and is doing so together with partners around the world.

THE PATIENT ORGANIZATION NPF

The US National Psoriasis Foundation (NPF) provides a platform for individuals whose lives have been impacted by psoriasis to find and share information about the disease. GPP and PPP patients are also supported by NPF, although both diseases differ in their underlying nature from more common plaque psoriasis. Additionally, the NPF promotes partnership with doctors and scientists.

“Partnering with Boehringer Ingelheim has helped to bring much needed attention to this underserved patient population,” says Emily Boyd Stormoen, Chief Revenue Officer of the NPF. “Through this work, NPF has developed critical resources to better serve this community.” For Boyd Stormoen, it is clear: “Boehringer Ingelheim is always looking for new and innovative ways to partner that will elevate the patient voice and bring attention to unmet needs of the community.”