Finding rare diseases in common places
Description
To improve treatment of rare diseases, it is critical that rare disease
detection approaches be improved, particularly in primary care settings
and in public health testing places such as health centers. These
environments constitute the front line for disease detection and play an
outsized role in protecting the public, particularly children.
Normally, emphasis is placed on testing for common diseases, which are
allocated most of the resources. But it could be argued that when
considered as a group, rare diseases are in fact common, and that
putting more resources toward their detection in primary health care
systems is a valid approach for improving diagnosis. In this webinar,
our experts will discuss strategies for implementing broad rare disease
detection across all doctor–patient interactions.
With:
Durhane Wong-Rieger, Ph.D. (Canadian Organization for Rare Disorders (CORD), Ontario, Canada)
Helen Malherbe, Ph.D. (Rare Diseases South Africa, Johannesburg, South Africa)
Eyby Leon Janampa, M.D. (Children’s National Hospital, Washington, DC)
Dong Dong Ph.D. (The Chinese University of Hong Kong, Hong Kong SAR, China)
Sean Sanders, Ph.D. (Moderator, Science/AAAS, Washington, DC)
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