Adapting care provision and advocating for unprotected unaccompanied minors in Paris in the context of COVID-19.

Unaccompanied minors (UMs) are children under 18 who arrive on the territory of a foreign country without the care of a guardian. In many countries their access to social and health care services depends on their legal recognition as minors. For instance, in France, high rejection rates of minor status place unprotected UMs in social precarity, such that in Paris, civil society organizations (CSOs) have stepped in to offer social, medical, and psychological care to unprotected UMs. In the context of the COVID-19 pandemic however, CSOs had to adapt their care provision.We review promising CSO-led initiatives to ensure continuity of care for this population. In doing so, we highlight how, by promoting UMs' healthy behaviors in the context of the pandemic, continued social interactions between CSO members and unprotected UMs may have contributed to disease prevention among UMs. In addition, CSOs have continued to advocate for sheltering unprotected UMs, calling on public authorities to take action.

Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database.

Rare diseases, an emerging global public health priority, require an evidence-based estimate of the global point prevalence to inform public policy. We used the publicly available epidemiological data in the Orphanet database to calculate such a prevalence estimate. Overall, Orphanet contains information on 6172 unique rare diseases; 71.9% of which are genetic and 69.9% which are exclusively pediatric onset. Global point prevalence was calculated using rare disease prevalence data for predefined geographic regions from the 'Orphanet Epidemiological file' (http://www.orphadata.org/cgi-bin/epidemio.html). Of the 5304 diseases defined by point prevalence, 84.5% of those analysed have a point prevalence of <1/1 000 000. However 77.3-80.7% of the population burden of rare diseases is attributable to the 4.2% (n = 149) diseases in the most common prevalence range (1-5 per 10 000). Consequently national definitions of 'Rare Diseases' (ranging from prevalence of 5 to 80 per 100 000) represent a variable number of rare disease patients despite sharing the majority of rare disease in their scope. Our analysis yields a conservative, evidence-based estimate for the population prevalence of rare diseases of 3.5-5.9%, which equates to 263-446 million persons affected globally at any point in time. This figure is derived from data from 67.6% of the prevalent rare diseases; using the European definition of 5 per 10 000; and excluding rare cancers, infectious diseases, and poisonings. Future registry research and the implementation of rare disease codification in healthcare systems will further refine the estimates.