By José Carlos Geraldo dos Santos, Associação Nacional de Osteogenese Imperfeita (ANOI), Brazil

From 16th to 18th May 2024, the event “BONE Dysplasias 2024” was held in Lisbon, Portugal. It was organized by the Portuguese OI-association (APOI). The programme was held in Portuguese, so this was a good chance to strengthen networking between the Brazilian and the Portuguese OI-associations.

Lectures both for professionals and patients

We had the privilege of attending both the technical lectures aimed at doctors and healthcare professionals and the lectures aimed at patients and their families. The topics that caught our attention the most were:

• Experiencing the transition to adulthood:
With advances in the motor development/ accessibility of people with OI, this topic is extremely relevant. And we need to delve deeper into it. Especially with parents, who will be the major influencers in shaping their children’s independence. Parents need to be aware of the relevance of this topic from an early age so that their children grow up independently capable of making their own choices.

• Getting back to active life – physiotherapy: Physiotherapy is given little priority, but without it you cannot progress. It is essential for people with OI. It is not enough to take medication and correct the bones. It is necessary to have individualized follow-up.

• Orthopaedic approach to OI and surgical therapy, highlighting the use of synthetic graft, absorbed by the bone, to facilitate screw fixation etc.

• What is new in OI medical therapy

Identified gaps at ANOI

We identified the need to implement measures to enable or strengthen some areas in ANOI’s work under the themes presented. Mainly in relation to improving the availability of organized information about OI and ANOI on the website and social networks, both for people with OI and for the medical staff. Further, consolidating in reference centers, a treatment transition strategy upon entering adulthood, so that the patient continues being followed up throughout adulthood.

Strengthen treatment in the field of physiotherapy, which has a significant impact on the condition of people with OI throughout their lives, not only in recovery from fractures. And finally, we see the need to improve monitoring in the field of psychology.

Deepened link between Brazilian and Portuguese OI-associations

The event allowed us to exchange experiences both with the group organizing the APOI event (Maria do Céu, Jorge, Marta, Fátima, Tiago), and with other APOI members and volunteers who we had the pleasure of meeting at the event (Sophia, Deolinda, Alexander, Hugo, Maria and many others). The exchange of experiences took place both at a personal level – in the exchange of experiences with OI as parents and carriers of the disease, in different times and realities in overcoming everyday difficulties. But it also took place in the organizational perspectives of managing the APOI and ANOI associations.

Similar aspects despite the distance of an ocean

Despite the distance of an ocean that separates Brazil and Portugal, we can identify many similar aspects between the associations. Such as the importance of embracing the cause and having the support of the family group/friends as volunteers in supporting the management of the association’s activities. This ranges from the production of informative material, dissemination on social networks, organization and execution of events, documentation, guidance for family members, to emergency support for OI sufferers during an emergency situation. We realized the difficulty of mobilizing and engaging mainly adult members with OI in the association’s activities and attendance at events, as well as the importance of delegating and professionalizing some of the association’s activities, in order to allow greater reach and dissemination of information about OI.

Information & training of professionals and members as take-home-message

We also identified the need to improve our website and facilitate the search for information on our social networks, improve the dissemination of knowledge about new developments. And we realized the importance of bringing laboratories together in the development of research and support to enable the training of professionals and representatives of ANOI, given our difficulty in serving the entire national territory in Brazil with very different realities.

Portuguese language as an aggregating factor

We realize that the Portuguese language can be an aggregating factor of great value. Our associations can produce material together and serve patients and families from any location in the world who reach us using the Portuguese language. And thus, can they be forwarded to the most appropriate reference centers in each country. It is therefore good that the associations know each other and are integrated. I would like to take this opportunity to congratulate all the organizers and supporters.

Full programme in Portuguese can be found here.

Abstract book in Portuguese and English can be downloaded here.

This article has first been published in OIFE Magazine 2-2024.