28 May 2021
Last week, applications opened for IFPA’s new Ambassador Program: a project that will support individuals called Ambassadors in communicating their lived experience with psoriatic disease. This program was created to promote the role of people living with psoriatic disease in advocacy, research, and community-building around the world. The Ambassador Program will consist of resources designed to support people living with psoriatic disease in sharing their experiences as well as an international platform to share their stories. Because people living with psoriatic disease are experts with valuable input on this topic, Ambassadors will be offered compensation for the time they spend on the program. Another major goal of the Ambassador Program is to represent the diversity of psoriatic disease itself as well as the people living with it.
“People living with psoriatic disease are experts with valuable input.”
In practice, IFPA will recruit a group of reliable and enthusiastic people, provide training and materials to develop messaging and storytelling skills, and produce advocacy and awareness campaigns featuring their voices and stories. These Ambassadors will be people with experience living with psoriatic disease or as a family-member, close friend, or caregiver to someone with psoriatic disease who are willing to publicly share their story and views. Eventually, Ambassadors will also be supported by IFPA to accept invitations from external parties, such as scientific conferences or corporate partners.
By shifting the model of engagement of people with lived experiences from a tokenistic presence to meaningful involvement, IFPA wants to set an example for other organizations in showing the value of the expertise that only people living with a disease have. When given the right conditions, people living with psoriatic disease can and should be enabled to influence the outcomes of the processes they are involved in.
“It is within our scope as advocates to include and represent all types of psoriatic disease in our work. Ambassadors, as a group, will represent the full spectrum of psoriatic disease.”
Because psoriatic disease can affect anyone, it is important for us to accurately represent the diversity of people living with psoriatic disease. Ambassadors are being recruited from all around the world to reflect how psoriatic disease affects people from all nationalities, ages, genders, ethnicities, races, and body types.
Psoriatic disease itself is not homogenous and presents itself in a range of different ways. Plaque psoriasis of course affects the greatest number of people, and more advocacy and awareness are required to combat common misconceptions and attain universal access to life-altering treatments. However, less common manifestations of psoriatic disease have historically been overlooked. Variants of pustular psoriasis like generalized pustular psoriasis and palmoplantar pustular psoriasis are examples of rarer manifestations of psoriatic disease that can severely influence quality of life and are still lacking in awareness and treatment options. Psoriatic arthritis is still underdiagnosed. Inverse psoriasis comes with its own unique challenges. Guttate psoriasis needs to be taken seriously. Erythrodermic psoriasis, although rare, is life-threatening and must be spoken about. Any form of psoriasis can affect a difficult-to treat area like the scalp, nails, genitals, hands, and feet and cause disproportionate suffering. It is within our scope as advocates to include and represent all types of psoriatic disease in our work. Ambassadors, as a group, will represent the full spectrum of psoriatic disease and be able to speak about the different manifestations.
With the Ambassador Program, we will promote the role of people living with psoriatic disease as valuable experts in the global arena. Ambassadors will represent the diversity of people affected by the disease as well as of the disease itself. There is a need for personal representation of our shared mission and to humanize our vision for a world free of suffering from psoriatic disease. We look forward to getting started with our first cohort of Ambassadors!