This work addresses the gaps in research and management of rare diseases in the Community of Portuguese-Speaking Countries. There is a lack of studies assessing rare disease-related digital and informational readiness, especially in African countries. International cooperation can lead to significant technological advances by measuring community members' digital maturity in managing health data, information systems, and medical technology. The main objectives include creating a collaborative network for rare diseases in the community, improving the registration and monitoring of patients, and promoting continuing education actions. From a scientific, technological, and innovation point of view, the project seeks to map the scenario using digital health tools, create strategies to establish and strengthen cooperation networks, define formative second opinion processes, and promote equitable access to digital health technologies to support decision-making. These actions will help to identify and fill gaps in governance processes, documentation, and practices, leading to realistic and equitable recommendations for better disease management in challenging contexts. Therefore, the cross-border collaboration is expected to promote a unified approach through the transnational sharing of scientific and clinical evidence, expanding the cooperation between team members and partner institutions.
BT - 2025 IEEE 38th International Symposium on Computer-Based Medical Systems (CBMS) DO - 10.1109/cbms65348.2025.00155 LA - ENG M3 - Article N2 -This work addresses the gaps in research and management of rare diseases in the Community of Portuguese-Speaking Countries. There is a lack of studies assessing rare disease-related digital and informational readiness, especially in African countries. International cooperation can lead to significant technological advances by measuring community members' digital maturity in managing health data, information systems, and medical technology. The main objectives include creating a collaborative network for rare diseases in the community, improving the registration and monitoring of patients, and promoting continuing education actions. From a scientific, technological, and innovation point of view, the project seeks to map the scenario using digital health tools, create strategies to establish and strengthen cooperation networks, define formative second opinion processes, and promote equitable access to digital health technologies to support decision-making. These actions will help to identify and fill gaps in governance processes, documentation, and practices, leading to realistic and equitable recommendations for better disease management in challenging contexts. Therefore, the cross-border collaboration is expected to promote a unified approach through the transnational sharing of scientific and clinical evidence, expanding the cooperation between team members and partner institutions.
PB - IEEE PY - 2025 SP - 747 EP - 750 T2 - 2025 IEEE 38th International Symposium on Computer-Based Medical Systems (CBMS) TI - Rare Diseases in the Community of Portuguese-Speaking Countries: Mapping, Advances in Digital Health, and International Cooperation ER -