Chief Executive Officer, International Psoriasis Council
Santa Rosa, California, United States
Frida Dunger Johnsson
Executive Director, IFPA
The International Psoriasis Council (IPC) and IFPA (the International Federation of Psoriatic Disease Associations) joined efforts in 2017, along with the International League of Dermatological Societies (ILDS), to combine their reach and produce the Global Psoriasis Atlas (GPA). The partnership between IPC and IFPA builds upon the mutual expertise and trust the organizations cultivated in that time.
In 2022, the IPC and IFPA formalized their collaboration, making official their desire to be productive partners sharing knowledge and supporting each other’s work across the globe.
“Unite, strengthen, and lead the global psoriatic disease community to improve the lives of all people affected by psoriatic disease.”
“Improve the care of people with psoriasis worldwide through education, research, and advocacy.”
To speak about the importance of this partnership over the last year, IPC Chief Executive Officer Christy Langan and IFPA Executive Director Frida Dunger Johnsson come together to discuss the partnership’s history, impact, and goals.
How did the initial collaboration on the Global Psoriasis Atlas come about?
Christy Langan: The Global Psoriasis Atlas was a vision of IFPA, and they worked with the World Health Organization (WHO) for many years. As the project continued developing, IPC was asked to provide a more scientific and medical perspective to the collaboration. One of the things that we learned early on is that having psoriasis professionals and patients working together creates an opportunity to create change.
Frida Dunger Johnsson: When you don’t have any data or statistics, it’s hard to understand how many people live with psoriatic disease. This crucial piece of data was missing. Collecting and understanding the data was a necessary next step.
How did the official partnership (established in February 2022) deepen the relationship between IPC and IFPA? Why was it a necessary or logical next step?
Frida Dunger Johnsson: IFPA and IPC are working towards the same goals. We have the same vision — not in exact wording, but what we are aiming for is the same. While our target groups are different, I believe our organizations will have a much more significant impact if we collaborate closely.
If the patient community is talking about their concerns in one room, and then the medical community is in a different room talking about something else. I believe that the most significant change and impact will happen when we become better at listening to each other and understanding each other’s needs. IFPA strives to unite the psoriatic disease community across borders and sectors.
Christy Langan: From a more operational perspective, I think there is value in putting this partnership on paper and making it “official.” Having great meetings is one thing, but then you go back to your respective offices and forget.
This partnership is also a statement to the external world and the internal communities that we are working with. That alone has made a difference in committing to regular dialogue putting projects together as we move forward.
What value do IPC and IFPA, both international organizations, bring to the table?
Christy Langan: As a global organization, you’re always learning. And the more you know about other communities and other people and other organizations — I think it just makes you a better person and a better organization to understand that what you live every day isn’t what every person lives every day.
Frida Dunger Johnsson: The networking alone is very valuable. For the patient community, we can’t have this impact on our own. It is crucial that we have a patient representative at every decision-making table and that there is shared decision-making between patients and healthcare professionals. We must collaborate to get where we want to be and achieve the future we see for the people living with the disease. There is an incredible benefit to the global nature of our organizations — but regional and national collaboration is also critical.
Christy Langan: One of the synergies this past year was that both organizations launched efforts to focus on a more regional level. IFPA and IPC have always focused their efforts globally, and now is the time for a more regional focus. Each region has different needs, and our organizations’ strategic plans are moving into that.
Frida Dunger Johnsson: Also, on a personal level, as we think about global and regional initiatives, talking to Christy and Peter (van de Kerkhof) has allowed us to learn from each other. I know that if I have any questions, I have someone to ask. That type of support is very valuable for us.
What do you hope to see this partnership accomplish in the next year?
Christy Langan: I think, in some ways, success is as simple as just bringing the two groups together. For example, the IPC Disease Severity Working Group has had one meeting with IFPA patient association members. It was very eye-opening to hear their perspective and the need for national guidelines – this has led to IPC increasing its efforts in this area.
The other thing I’m excited about this year is our symposium agenda at the World Congress of Dermatology in Singapore. It is very focused on physician and patient partnerships, and we hope to have a few speakers from IFPA on the panel. It’s a big step for that to be a major priority this year.
Frida Dunger Johnsson: IFPA wants to make some noise in Singapore. We want to raise psoriatic disease on the global agenda and people to know about the collaboration. With our names out there in the world together, we’re making a strong statement — and what we have to offer each other will only raise the legitimacy and capabilities of both of our organizations.
Since the announcement of this partnership, I have heard positive feedback from different partners and people throughout the psoriatic disease community. I want us to be able to be loud and bring change. I am convinced that this will inspire other collaborations and lead to better results for people affected by psoriatic disease.
What is something you admire about the IPC or IFPA? Why are they a good fit for a partnership?
Frida Dunger Johnsson: The patient voice is essential and powerful. Every patient has their own lived experience and should be considered an expert in their own disease. IPC provides the medical experience to the mix and this is invaluable. I admire what IPC is doing to raise that expertise among dermatologists — every IPC Councilor I’ve met has been so wonderful.
Most of the stories I hear from our patient community are that they haven’t been lucky enough to meet a dermatologist as knowledgeable and thoughtful as an IPC Councilor. It is excellent that IPC is working to increase that knowledge among dermatologists worldwide — it will make such a difference for the patient community.
Christy Langan: I’ve been in this field for a long time and watched IFPA grow into a successful and respected patient advocacy group. Over the past ten years, it’s been amazing to watch IFPA’s membership grow from 35 member organizations to over 60.
In addition to that, I deeply admire IFPA’s passion, drive, and motivation for things to change. It’s contagious. Frida makes that infectious energy even more prominent as she brings it to the greater community. IFPA and Frida make people want to listen. They are pushing us all to work harder and work together.