The Role of the “Eu Luto Pela Imuno Brasil” Association in Supporting Patients with Inborn Errors of Immunity in Rio Grande do Sul

October 20, 2025

The Role of the “Eu Luto Pela Imuno Brasil” Association in Supporting Patients with Inborn Errors of Immunity in Rio Grande do Sul

The desire to provide a better quality of life for patients with immunodeficiencies brought together a group of physicians and advocates, leading to new ideas, projects, and achievements for patients and families in Rio Grande do Sul, Brazil. Since then, the Association “Eu Luto Pela Imuno Brasil” (ELPIB) has strengthened its mission to welcome, inform, and advocate for the rights that ensure early diagnosis and appropriate treatment.

Psychological Support and Patient Care
One of the most important steps taken was the implementation of specialised psychological support. Parents and patients now have access to four free sessions with psychologists specialised in grief and rare diseases. This initiative has been fundamental in providing emotional support, reducing the impact of diagnosis, and reinforcing a sense of belonging and collective empowerment. The importance of quality of life interventions in patients with inborn errors of immunity has been consistently highlighted in recent studies.

Awareness and Information
Expanding knowledge about Inborn Errors of Immunity (IEI) has been one of ELPIB’s main objectives, as information is considered an essential tool for early diagnosis. With this focus, the Association sought sponsorships and produced two strategic educational materials:

Poster of the 10 warning signs for Primary Immunodeficiencies, distributed in primary care units, emergency departments, and pediatric outpatient clinics. Its goal is to raise awareness among parents and patients so they can recognise possible symptoms, remain vigilant, and even question physicians about signs that might otherwise go unnoticed.
Informational card, distributed in hospitals and medical offices, handed to newly diagnosed patients. This material provides ELPIB’s contact information and highlights that, by joining the Association, patients become part of a support network. The central message is clear: no one is alone on this journey.

Advocacy and Public Policy
In the field of public policy, ELPIB has mobilised to demand advances that should already have been implemented. The Association formally addressed local authorities and secured a public hearing to discuss the implementation of the expanded newborn screening (“teste do pezinho”) for immunodeficiencies, as guaranteed by Federal Law No. 14.154 (2021). This law mandates the nationwide expansion of neonatal screening, including rare and severe conditions such as IEI. However, despite being legally established, this test is still not effectively available in Rio Grande do Sul. ELPIB remains firm in this advocacy, confident that progress will be achieved, as expanded newborn screening is a crucial step to guarantee early diagnosis, enable appropriate treatment, and prevent severe and irreversible complications.

Conclusion
These initiatives represent an important step toward raising awareness and strengthening care for patients with primary immunodeficiencies, highlighting the essential role of health education as a transformative tool. Looking ahead, ELPIB is committed to expanding its impact by planning new initiatives, including an awareness event with lectures for newly graduated physicians and a patient meeting to foster learning, integration, and mutual support. Each project brings the Association closer to building a more promising future, ensuring a healthier and better life for patients.