GPP: the case for rare disease and orphan designation

Skin Failure: Generalized Pustular Psoriasis

Patient representatives and doctors are urgently calling for GPP to receive “orphan” status. This could lead to more research and better treatments for GPP.

Click the image below for access to read the publication.

The article is available for open access: https://doi.org/10.1111/bjd.21231

What is GPP?

Generalized Pustular Psoriasis is different to other types of psoriasis because it can have a more severe impact on peoples lives and sometimes life-threatening

What is the Physical Burden of GPP?

• Long-lasting damage to the skin
• Painful blisters on large areas of the skin
• Sudden and unpredictable flare-ups
• Fever

What is the emotional burden of GPP?

• Employment
• Sleep
• Relationship and social life
• Anxiety about having the wrong diagnosis
• Anxiety about sudden flare-ups

Is there a cure or treatment for GPP?

As of April 2022, there is no approved treatment for GPP. People living with GPP urgently need better treatment. When someone has GPP they need urgent treatment to avoid putting their lives in danger. Medicines may stop life-threatening flare-ups.

Do the medicines work?

Up until the publication of this article, there is not much evidence that these medicines work in fact some of them may have harmful side effects

What can be done to help people with GPP?

• Rare diseases need a cure and better treatment
• Patient research partners at EUROPSO and IFPA collaboration paper with medical experts' consensus paper on GPP is now available for open access, now published on the British Journal of Dermatology

Infographic and lay summary available in the Rare Psoriatic Disease Communications Toolkit.