Providing information to the world on Angelman Syndrome
 
This project has been a long term originating from the vision of FAST Australia and becoming reality with a collaborative partnership with the Mater Medical Research Institute, Associate Professor Honey Heussler at the Lady Cilento Hospital, Murdoch University Western Australia.
 
Funding to date:
Murdoch University (System development and hosting): $37154
Mater Medical Research Institute (Registry Curator): $30,019 (year 1 PPT of a 3yr commitment)
 
The largest study on individuals with Angelman Syndrome is approximately 300 indivuduals. This study, although longitudanal is not easily accessible for research and analysis and was conducted at research institutes in the United States, requiring participants to, in most cases, travel to take part in the study.
The Global Angelman Syndrome Registry is the first of its kind in that it is parent driven. 
 
still more to come here & will link out to GASR page & website. I did have this linked to another page but I think this is more useful....

Link to video

 

Link to our info

http://cureangelman.org.au/AngelmanRegistry/

 

Link to registry


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