Resources

Social Media

Keep up to date with TSCNZ events and news through our Facebook Page

Talk with other people and families who have Tuberous Sclerosis at the Discussions of Tuberous Sclerosis in Australia and New Zealand (a closed facebook group) Discussions of Tuberous Sclerosis in Australia and New Zealand

TSCNZ Publications

Newsletters
May 2017
November 2016
April 2016
February 2016
November 2015
July 2015

3 fold Brochure

Surveillance and Management Guidelines

TAND checklist

Balloons with the TSCNZ logo

Contact us if you would like these resources sent to you free of charge or print them off this website.

International Publications

Tuberous Sclerosis Australia's excellent magazine Reach Out

Peer-Reviewed, Published Consensus Papers

The following papers are available free of charge with open access to anyone in the world. We encourage you to share these links with your health professionals.

Northrup, H., et al., Tuberous Sclerosis Complex Diagnostic Criteria Update: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference Pediatric Neurology (October 2013)

Krueger, D.A., et al., Tuberous Sclerosis Complex Surveillance and Management: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference Pediatric Neurology (October 2013)

Roth, J., et al., Subependymal Giant Cell Astrocytoma: Diagnosis, Screening, and Treatment. Recommendations From the International Tuberous Sclerosis Complex Consensus Conference 2012 Pediatric Neurology (December 2013)

Leclezio L et al. Pilot Validation of the Tuberous Sclerosis-Associated Neuropsychiatric Disorders (TAND) Checklist, Pediatric Neurology (January 2015)

deVries PJ et al. Tuberous Sclerosis Associated Neuropsychiatric Disorders (TAND) and the TAND Checklist, Pediatric Neurology (January 2015)

Hinton RB et al. Cardiovascular manifestations of tuberous sclerosis complex and summary of the revised diagnostic criteria and surveillance and management recommendations from the international tuberous sclerosis consensus group, Journal of the American Heart Association (November 2014).

Teng JMC et al. Dermatologic and Dental Aspects of the 2012 International Tuberous Sclerosis Complex Consensus Statements, JAMA Dermatology (October 2014)

Tu, J., et al., Topical rapamycin for angiofibromas in paediatric patients with tuberous sclerosis: follow up of a pilot study and promising future directions. Australas J Dermatol, 2014. 55(1): p. 63-9.

R. S. Foster, L. J. Bint, A. R. Halbert. Topical 0.1% rapamycin for angiofibromas in paediatric patients with tuberous sclerosis: a pilot study of four patients. Australas J Dermatol 2012; 53: 52-56.

Useful Websites within New Zealand

Carers New Zealand

CCS Disability Action

Disability Connect

Epilepsy Foundation

Epilepsy New Zealand

Foetal Anti-Convulsant Syndrome New Zealand

Health and Disability Commission

Hopeworks

IHC

Imagine Better

My Care

Ministry of Health

New Zealand Organisation for Rare Disorders

Parent to Parent New Zealand

Starship Children's Health

Wilson Home Trust