Patient organizations are crucial to achieving equitable healthcare globally

Stockholm is home to many international non-profit organizations. One of them is IFPA – the International Federation of Psoriasis Associations. Frida Dunger, IFPA’s Executive Director, tells about the organization, how they work to strengthen global public health, and what is needed moving forward.

What is IFPA and what are you aiming to achieve? 

IFPA is a global patient organization that brings together 66 member organizations worldwide, including the Swedish Psoriasis Association. IFPA was founded as early as 1971. Our vision is that everyone living with psoriasis and psoriatic arthritis should enjoy good health and quality of life, free from stigma and preventable disability and comorbidities. We work to strengthen the global psoriasis community and to contribute to more equitable and inclusive health policies.

What attracted you to IFPA? 

I have always worked with questions related to human rights, equality, and social change—both within civil society and in other sectors. What attracted me to IFPA was the opportunity to combine these in a global context, in close collaboration with patients, academia, and policymakers, and to contribute to real change for people living with psoriasis.

Why is a global organization needed? 

Despite the fact that over 100 million people live with psoriasis, there are still major gaps in knowledge, both in society and within healthcare. Psoriasis is often seen as a skin condition, but it is a systemic inflammatory disease that increases the risk of other serious conditions such as diabetes and cardiovascular disease, and is strongly linked to mental health issues.

The disease is often visible, which leads to stigma and discrimination. Many people live with anxiety, depression, and limitations in their daily and working lives. Despite increased awareness since the WHO recognized psoriasis as a global public health challenge in 2014, many people still lack a correct diagnosis and effective treatment. This can lead to serious comorbidities and significant societal costs. This is where a global organization plays an important role in bringing together resources, knowledge, and advocacy.  

We are also engaged in political processes related to human rights and equitable healthcare, contributing to the work of the UN and WHO to strengthen global guidelines. At the same time, we work to increase awareness, promote early diagnosis, and improve expertise within healthcare. 

How do you work to create change?

An important part of our work is to elevate the patient perspective in policy development and decision-making processes.

In addition to our work in advocacy in global arenas, including within the UN and the World Health Organization, where we ensure that psoriasis is included in international guidelines and strategies, we also collaborate with universities and research institutes to strengthen the evidence base and contribute to more inclusive research.  

We also support our members in increasing knowledge globally and in shaping future leaders.

Examples of initiatives

• IFPA Conference – a leading international conference on psoriasis and psoriatic arthritis, held every three years (next in Stockholm in 2027)
• IFPA Forum – regional meetings where patients, healthcare professionals, policymakers, and civil society come together to identify needs and solutions based on local contexts
• World Psoriasis Day (October 29) – a global campaign to raise awareness, highlight patient experiences, and drive advocacy

What challenges do you see globally? 

Challenges vary between regions, but often involve a lack of awareness, limited access to care, and a shortage of specialists. In many low- and middle-income countries, access to medication is a major challenge, misdiagnosis is common, and stigma is widespread. Reliable data for psoriasis is also often lacking, making it difficult to fully understand the scope of the disease and the need for interventions.

What is needed going forward? 

There needs to be greater awareness of psoriasis and psoriatic arthritis as serious and complex diseases, improved access to care and treatment, and a stronger focus on the patient perspective in all decisions. At its core, this is about equity—that people, regardless of where they live, should have the opportunity to live a full and healthy life. Patient organizations play a crucial role here, both as advocates and as drivers of change.

Read the original text in Swedish here