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A preliminary summary has been released from a recent survey launched by the Rare Diseases Clinical Research Network (RDCRN) with support from the National Institutes of Health’s National Center for Advancing Translational Sciences (NCATS) and the RDCRN’s 20 disease-specific consortia.
The survey of caregivers and people living with rare diseases highlighted their experiences during the novel coronavirus (COVID-19) pandemic with the hope of providing awareness of the needs of those individuals.
The summary covers accessibility of treatment and gravity of infection with relation to COVID, as well as treatment accessibility for routine care and treatment.
The full preliminary survey summary can be found on the Rare Disease Clinical Research Network website, or on the link below.
