INAPE - National Institute for the Support of People with Spondyloarthritis, Brazil

INAPE – National Institute for the Support of People with Spondyloarthritis, Brazil

Rafael Comparsi

The National Institute for the Support of People with Spondyloarthritis (INAPE) is a Brazilian non-profit organisation dedicated to supporting, educating and defending the rights of people living with spondyloarthritis and other immune-mediated rheumatic diseases.

Officially founded in December 2023, INAPE was born from the urgent need to transform the reality of thousands of Brazilian patients who face late diagnoses, social invisibility, and difficulties in accessing information and treatment. More than an institution, INAPE emerged as a movement built by people who deeply know the physical, emotional and social impacts of inflammatory rheumatic diseases.

This commitment to authenticity is reflected in its governance model. All board members live with a condition that we represent, ensuring that each institutional initiative is guided by the actual patient experience. The president of INAPE, Clarice Nunes, is a patient, institutional communicator and specialist in organisational culture and diversity. Under her leadership. the institute transformed individual experiences into structured collective actions, combining empathy, social responsibility and professional management.

Even though it is a young organisation, INAPE has shown significant growth throughout Brazil. Between 2024 and 2025, it expanded its membership base by more than 500%, reaching more than 650 active members distributed in 24 Brazilian states, in addition to connecting Portuguese-speaking patients residing in countries such as Canada, Portugal and Japan.

Digital performance has become one of the main pillars of community strengthening. Through educational campaigns, accessible content with a scientific basis and awareness initiatives, the institute has established a meaningful online presence. This presence promotes reliable information, representativeness and belonging for thousands of people who often live with invisible pain and social misunderstanding.

Campaigns such as World AS Day and Purple May have expanded public dialogue on inflammatory rheumatic diseases and strengthened opportunities for collaboration with the Brazilian Society of Rheumatology and other patient associations across the country, contributing to awareness of early diagnosis, quality of life, and health rights.

INAPE’s work goes beyond support between patients. The institute actively invests in health education, advocacy, community strengthening and comprehensive care. Among its initiatives are the production of a Patient Guide with more than 100 pages of educational content, informative digital materials, awareness magazines and support groups led by health professionals and trained volunteers.

Emotional and personal care also play a central role in their work. The institute promotes initiatives aimed at mental health, therapeutic support, spirituality, women’s health and connection between patients, reinforcing the importance of seeing each person beyond the diagnosis.

INAPE at the 1st meeting of rheumatic patients in São Paulo, Brazil in 2025.

In the area of advocacy and public policies, INAPE has expanded its participation in national debates related to access to health and health technology assessment. The organisation participated in public consultations coordinated by CONITEC, contributing to discussions on vaccination and access to treatments for patients with immune-mediated diseases.

The institute is also part of scientific and institutional networks of international collaboration. Through its membership of ASIF and BioRed Brasil, INAPE participates in global awareness campaigns, patient engagement initiatives, and collaborative studies such as ASIF’s LAMAS project.

Another key aspect of INAPE’s institutional development is its commitment to transparency, ethics, and governance. The organisation aligns its initiatives with the UN Sustainable Development Goals, maintaining compliance practices and editorial independence in its institutional relations.

In 2026, the Reumafit Journey project, aimed at metabolic health and encouraging healthy habits for people with spondyloarthritis, was recognised among the main projects in Brazil by the CCNTs Forum contest, alongside initiatives developed by universities, municipalities and consolidated institutions.

INAPE at the Reumafit Journey project award at the 18th Forum on Chronic Non-Communicable Conditions 2026

Today, INAPE represents a new generation of patient organisations in Brazil: technically responsible, socially committed and built by the very community it represents. By combining professional advocacy, scientific collaboration, and lived experience, the institute continues to strengthen the voice of people with spondyloarthritis and help build a more dignified, informed, and humane future for patients and families in Brazil and around the world.

Find out more about INAPE

INAPE – National Institute for the Support of People with Spondyloarthritis, Brazil

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