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PURA Syndrome EEG Research Study - closing soon

We are thrilled that over 60 families will be participating in the PURA Syndrome EEG Research Study - so far!

Just a reminder that enrollment for this study will conclude on Friday, April 19th, 2019 and it is not too late to enroll.

The research study being spearheaded by Katrine Johannesen from the Danish Epilepsy Research Hospital in Denmark.

Additional information and details about the study can be found on our website:

If you are already enrolled in the EEG study and have any questions, please reach out to Katrine Johannesen at As a reminder, the EEG information should be coming from your clinician, so you may consider following up with them to confirm the information was sent as well. Please note that Katrine is NOT able to confirm receipt of any information because it will be made anonymous for the research by the time it gets to her.

As always: THANK YOU for your help!


The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , management, and health . Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication , some facts may change later .