Introduction to Policy Framework
There has been growing activity at the UN level and different regional/country levels, such as the EU and Asia-Pacific Economic Cooperation (APEC), to develop policy platforms and frameworks to address rare diseases. Examples include: the UN NGO Committee for Rare Diseases; the European Union Commission; the National Plans for Rare Disease in EU Countries; and APEC.
Where possible, the Global Commission suggests that its policy recommendations be incorporated into existing local/regional frameworks and be considered during the development or review of Rare Diseases Plans, within the working plans of government bodies responsible for rare disease policy implementation, and through innovative frameworks of how the use of AI and technologies can disrupt healthcare delivery. In addition, the recommendations adhere to guidance outlined through the EU General Data Protection Regulation (GDPR).