02243nas a2200313   4500000000100000008004100001260000900042653001800051653001900069653003100088653003000119653002200149653002700171100001100198700001500209700001100224700001400235700001300249700001500262700001600277700001600293700001300309700001400322700001200336700001200348245013600360300001200496520142100508       2025                            d  bIEEE10aRare Diseases10aDigital health10aHealth information systems10aInternational Cooperation10ahealth governance10aGlobal health networks1 aLima V1 aBernardi F1 aRijo R1 aFreitas A1 aFélix T1 aSchwartz I1 aRodrigues A1 aSanjuluca T1 aZavale O1 aMadeira L1 aSouza J1 aAlves D00aRare Diseases in the Community of Portuguese-Speaking Countries: Mapping, Advances in Digital Health, and International Cooperation  a747-7503 a<p>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.</p>