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Science Webinar “Knowledge is power: The urgent need to internationalize databases for rare disease patients”
September 29, 2022 @ 6:00 pm
There are multiple barriers to rare disease diagnosis, including access to testing technologies, availability of knowledgeable health care providers, and lack of uniformity of the phenotype for a given genotype or disease-causing agent. These barriers significantly lengthen the time between detection of a rare disease and its diagnosis, aptly called the diagnostic odyssey.
The collection and sharing of accurate, standardized data are key priorities in shortening the diagnostic odyssey.
During this webinar, the panelists will:
- Outline current challenges in creating and maintaining global rare disease patient databases
- Share examples of current paradigms shown to be effective and beneficial
- Discuss what is needed to improve current systems and make truly useful patient databases a reality.
Registration page: https://view6.workcast.net/register?cpak=5263952065562539