Information provided by Henrique Benincaza dos Santos, Associação Nacional de Osteogenese Imperfeita (ANOI)

Mother holds child with OI in Soccer stadium

How many people with OI does Brazil have?

The exact number is unknown; we have an estimate of around 14 thousand people living with osteogenesis imperfecta in Brazil.

Tell us about the situation for OI-people in Brazil!

In Brazil, we have 15 Reference Centers for Osteogenesis Imperfecta (CROI), where registered patients receive multidisciplinary care. We have a Clinical Protocol and Therapeutic Guidelines (PCDT) for OI under the Unified Health System (SUS), which is public and establishes criteria for the diagnosis, pharmaceutical and non-pharmaceutical treatment for children and adults. However, we still face challenges in telescopic rod surgeries, as few practitioners master the technique.

When was ANOI founded? How is it managed?

Associação Nacional de Osteogenese Imperfeita (ANOI) was founded in May 2017, as a restructuring of the former ABOI (Brazilian Association of Osteogenesis Imperfecta), established in December 1999. It is a private entity, legally constituted as a civil association with no economic purposes. Operating on organizational, welfare, and educational principles, with no political or religious affiliation, ANOI is governed by its bylaws, internal regulations, and other legal provisions. ANOI has been active, particularly in the production and dissemination of information about the condition, its characteristics, and treatment possibilities. ANOI also represents civil society in various arenas of public authorities. The organization is managed by a board of 5 members, an executive council of 3 members, and a fiscal council of 3 members. In all 27 Brazilian states, we have regional coordinators who closely follow individuals with OI and their families. All members are volunteers.

Smaller group of People, 2 in wheelchairs, wearing yellow shirts

 

How many members does ANOI have? How do you recruit more members?

Currently, we have 1,862 individuals with OI registered. This number has been achieved through partnerships with reference centers, establishing a network of contacts. Upon the birth of a child with OI in these reference centers, ANOI is notified. This marks the beginning of crucial initial contacts with the parents and guardians of the child with OI. In many cases, it is highly likely that the parents and family members also join ANOI as legal representatives of these children.

What are the biggest challenges for your organization?

Our greatest challenge is to structure ANOI so that it can stand on its own feet. In the realm of ANOI’s actions, this involves training healthcare and education professionals, as well as promoting research for gene therapy.

What has been your biggest success so far?

Woman Standing beside a flipchart

We believe that ANOI’s greatest success or achievement was when the SUS (Brazil’s Unified Health System) took over the funding of treatment and established the 15 Reference Centers for OI (CROI). This included guidelines for registering OI reference centers nationwide, the appointment of a Coordinator for CROI in Brazil, the adoption of the Montreal Protocol, and specific funding for the OI program.

Regarding projects, we can mention: Priority access in public hospitals for orthopaedic and surgical emergencies, surgical procedures, and ensuring the purchase of telescopic rods for the treatment of OI for all Brazilian states.

 

Why is it important for you to be associate member of OIFE?

It is a significant step for ANOI to be part of an international community addressing crucial issues related to OI. We share a similar mission, but encounter different opportunities due to our economic, social and cultural reality, and the vast dimensions of our continent. ANOI believes that we stand to gain much in terms of new knowledge and approaches to OI by being a part of this community. Sharing our journey, struggles, victories, and, why not, difficulties could be highly interesting for OIFE in terms of problem-solving: How did we get here, being an association that needed to redefine/rebirth itself to preserve its history that began in 1999! It’s worth mentioning that ANOI is part of a group of OI-Organizations in Latin America. We exchange information and gather in a virtual environment.

What are your plans for the future?

ANOI has plans and several projects in development. This includes training healthcare professionals—promoting technical training for orthopedists, radiologists, nurses, plaster technicians, attendants, social workers, and other healthcare professionals directly involved with OI. The goal is to find ways to make childbirth as little traumatic as possible, given that any mechanical shock can cause fractures. The organization aims to expand physiotherapy services, enhance psychological support for patients and their families undergoing OI treatment.

This article was first published in OIFE Magazine 1-2024.