Fundraising and Events
Global PURA Patient Registry: A quick question?
November 25, 2019
Starting the PURA Registry!
April 8, 2019
Dominic J. Spadafore
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: https://www.purasyndrome.org/eeg.
If you are already enrolled in the EEG study and have any questions, please reach out to Katrine Johannesen at email@example.com. 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!