Process and Benefits of Rare Disease Registry - PowerPoint PPT Presentation

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Process and Benefits of Rare Disease Registry

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Finding a cure for a rare disease take time and it needs proper strategy and planning. Patients face consequences because of a lack of medication and lack of information regarding that disease. A rare disease registry is a system that allows collecting and sharing patient data with the researchers with the aim of finding the cure. It also helps patients in knowing more information about their disease and its cure. – PowerPoint PPT presentation

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Title: Process and Benefits of Rare Disease Registry


1
Why Rare Disease Registry Is Need Of The Hour?
rare-x.org
2
According to the United States if a disease
effect less than 2,00,000 then it will be
considered an extremely rare disease. Patients
can face problems if the proper medication is not
available for that rare disease. In this
condition, it becomes very difficult for doctors
also to find a cure without any proper research.
rare-x.org
3
How Rare Disease Registry Will Help Us?
The main aim of data collection is to perform
detailed studies of these rare diseases and to
understand them. Rare Disease Registry is more
than an online system to collect and store data
it helps patients in assessments of their health
condition and they can also learn and know about
other patients. Basically, the Rare Disease
Registry helps researchers and drug developers to
find the cure of the diseases to help the
patients.
rare-x.org
4
Steps to Rare Disease Registry
rare-x.org
5
LOCATION 26895 Aliso Creek Road Suite 246B,
Aliso Viejo, CA 92656
CONTACT US www.mysleepwize.com
rare-x.org
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