6 Answers | 3 Thanks
Neurofibromatosis Association of Australia (NFAA) Inc. www.nfaa.org.au for further information and contact with others with the same condition.
For further information please contact the Prader Willi Syndrome Association of NSW (Aust) Inc www.pws.org.au/nsw
AGSA has profiled this condition in our newsletter with a family story. Please contact AGSA for further information.
AGSA has a number of families on our database with this condition and there is a support group that can be contacted on rtsaustralia@hotmail.com.au
The Chromosome 18 registry is an excellent support organisation and they are involved in research studies.
www.chromosome18.org/