People living with a skin condition known as psoriatic disease in Africa are calling for greater inclusion in decisions about their treatment, amid growing concern over the high cost and limited access to care across the continent. Underscoring the scale of the issue, Ingvar Ágúst Ingvarsson, President of the International Federation of Psoriasis Associations (IFPA), said “in some African countries, treating severe psoriatic disease can consume person's annual salary. These are not statistics. These are lives.” “We cannot treat people with evidence that was not built for them. We need African-led research, African data, and African scientists, clinicians, and patient advocates at the table where knowledge is created,” he said during IFPA Forum Africa 2026. Africa held its first-ever continental summit on psoriasis in Nairobi from May 7–9, bringing together patient advocates, clinicians, researchers, and policymakers to address the largely overlooked disease. Co-hosted by IFPA and PsorAfrica, the three-day event focused on practical advocacy, closing gaps in healthcare systems, engaging young people, and including patients in decision-making. Psoriasis and psoriatic arthritis are chronic, incurable diseases that cause pain, disability, stigma, and economic hardship. In Africa, where an estimated 3.5 million people are affected, care is limited by few specialists, scarce access to biologic treatments, and patients often forced to travel for care. Pierre Celestin Habiyaremye, President of PsorAfrica, and Founder of Rwanda Psoriasis and Psoriatic Arthritis Organisation, said he has always believed that every African should have access to affordable, good-quality healthcare. “However, it bothers me when access to care depends on where someone comes from or how much they can afford,” he said. Kenya’s Deputy Permanent Representative to the UN in Geneva, Ambassador James Waweru, called the summit a milestone. “Although the disease affects millions, it is often under-recognised and undertreated. The summit is an important step toward raising awareness and supporting those living with psoriasis,” he said. Addressing barriers to treatment and inclusion The opening session paid tribute to Dr. Hoseah Waweru, founder of the Psoriasis Association of Kenya. His son reflected on his father’s legacy: “He understood that psoriasis affects entire families. He believed no one should suffer in silence and worked tirelessly to provide resources and education.” A central discussion at the Forum focused on access to medicines and structural barriers to diagnosis and treatment. Participants underscored that improving access requires integrating psoriasis into government priorities and healthcare systems. “Psoriasis has a major impact on patients’ quality of life, yet securing political attention is a challenge,” said Prof. Mahira El Sayed of Ain Shams University, Egypt. Dr. Edwin Kojo Ogara from WHO Kenya pointed out that government policy discussions need statistics and evidence to scale successes across Africa and inform global advocacy. Janet Mbugua, media professional and Forum moderator, reiterated: “Nothing about us without us. People with psoriatic disease must be present in rooms where decisions about them are being made.” Tina Ochsner from the Psoriasis Association of Kenya reflected on growing up with visible psoriasis: “When you have such a visible condition, it’s not just your condition, it’s everyone’s condition.” Youth advocacy and regional collaboration Another major key focus of the Forum was the need for meaningful youth participation in health advocacy and decision-making. In the plenary “Young Voices, Stronger Psoriatic Disease Systems,” speakers called for young people to be actively involved in leadership and policy processes, rather than symbolically included, stressing that their engagement is vital for strengthening psoriatic disease systems and sustaining global health advocacy. “Young people want to be part of the solution,” said Guuled Mohamed of UNICEF Sweden. “Experts on young people are young people themselves.” Dr. Doriane Sabushimike from Burundi stressed the need for reaching patients with the greatest unmet needs through community outreach. The Forum’s final day focused on regional collaboration and practical next steps. IFPA members from Africa, Europe, the Americas, and Asia-Pacific shared strategies and advocacy successes. PsorAfrica participants highlighted achievements in South Africa, Ghana, and Gambia. The International Psoriasis Council workshop, dubbed, “From clinic to community,” promoted African-led research and clinician-patient collaboration, featuring Nigeria’s Psoriasis Registry, which aims to guide policy and healthcare planning. Closing the forum, Ingvarsson said, “What we have built here is not a programme of sessions, but a network of people ready to carry this work forward. Let this forum not be an endpoint, but a milestone.” Based on the forum’s discussions, IFPA will develop a roadmap and practical playbook to support member organisations. Implementation will depend on continued collaboration between patient organisations, clinicians, governments, and international partners. About IFPA IFPA, based in Stockholm, Sweden, is a global organisation advocating for everyone affected by psoriatic disease.
