We set out to be a part of the solution for rare diseases.
The "Istanbul Undiagnosed and Rare Diseases Solution Platform-ISTisNA" Project, coordinated by Acıbadem University with partnership of Istanbul University, is a comprehensive project funded by the Istanbul Development Agency.
ISTisNA is dedicated project in the field of undiagnosed and rare diseases. ISTisNA brings together all the main players of the rare- undiagnosed disease field – researchers, biobankers, industry, stakeholders, patients and patient associations– to boost biomedical research.
The ultimate goal of ISTisNA is to guide coordinated biobank activities, translational research, education and dissemination.
Worldwide, 300 million people are struggling with rare diseases.
Only > 500 of the 7.000 rare diseases have a treatment.
80% of all rare diseases have a genetic background.
The childhood rate of rare diseases is ~5%.
Stay Aware!
That one person needs your help.
Most people with rare diseases struggle with financial and psychological difficulties caused by lack of information, prolonged diagnosis and similar processes. If they are not in our family or close circle, we don't see them. We don't recognize their diseases.
But they do exist. They are indeed many. They need to feel heard.Follow us on our social media accounts!
Coming soon!
Biobank Network Catalog
Send us your research and studies on rare and undiagnosed diseases!
Announcements and News
Our last 2 announcements and news are listed. Click here to reach all of them.
Our last 2 blog articles are listed. Click here to reach all of them.
Our Trainings
Orphanet Nomenclature Training
January 19 - 20, 2023
Acıbadem Mehmet Ali Aydınlar University
days
hours
minutes
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Our courses has been completed.
You can follow our upcoming events from here
Become the ISTisNA Awareness Ambassador!
We-as the ISTisNa Platform-set out to make rare diseases more visible and increase awareness both in healthcare sector and general population. Every single contribution can make a big difference on this journey. We need to flap our wings together.
Apply Now!to become an "ISTisNA Awareness Ambassador"
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