Resources

Below you'll find links to documents, videos and online resources.

If you would like to receive hard copies of our resources, please email info@tsc.org.nz

We have a 3 fold brochure, Parachute packs, revised Surveillance & Management Guidelines, TAND checklists and Tubee , a children's book that helps explain TSC.

TSCNZ Publications

to download

Latest Newsletter

TSCNZ Parachute Packs:

Unborn Child - Likely Diagnosis

Child - New Diagnosis

Adult - New Diagnosis

Information for Health Professionals

Useful Resources:

TSCNZ 3 fold Brochure

Surveillance & Management Guidelines

TAND checklist

Parent & Caregivers Guide

TS Australia Clinicians Guide

Links to resources for young people

Mindfulness video (TSA Aus)

Sex & sexuality in young adults with TSC (TSA Aus)

Adolescents & transition to adult life (TSA UK)

Transitioning from child to adult care (TSA Aus)

Young People & Epilepsy (Epilepsy NZ)

Siblings of people living with TSC (TSA UK)

Go to What is TSC? for more resources

Newsletters:

2026: May, Jan

2025: Sep, Apr, Feb

2024: Oct, May, Jul | 2023: Oct, Jul, April

2022: Nov, Jul, April | 2021: Oct, Jul, Apr, Jan

2020: Nov, Jul, Apr, Feb | 2019: Nov, May

2018: Dec, May | 2017: Dec, May

2016: Nov, Apr, Feb | 2015: Nov, Jul

August 2025 AGM:

TSCNZ Performance Report and Review

Previous AGM performance reports:

2024 | 2023 | 2022 | 2021 | 2020

Sirolimus Presentation 2020 AGM

Social Media

Keep up to date with TSCNZ events and news through our Facebook Page, Instagram, Linkedin and X

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.

Social

YoungPeople

International Resources

Tuberous Sclerosis Australia's excellent magazine Reach Out

Tuberous Sclerosis Complex International

The U.S. TSC Alliance

Useful NZ Websites

Carers New Zealand

CCS Disability Action

Disability Connect

Epilepsy New Zealand

Foetal Anti-Convulsant Syndrome NZ

Health and Disability Commission

Rare Disorders New Zealand

Parent to Parent New Zealand

Starship Children's Health

Wilson Home Trust

Presentations

From Conferences:

Videos TSCNZ Conference 2023

Videos TSC National Conference 2018

Genetics Presentation Powerpoint

View more videos on our You Tube Channel

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.

International consensus recommendations for the identification & treatment of TSC-associated neuropsychiatric disorders (TAND)

Northrup, H., Aronow, M. E., Bebin, E. M., Bissler, J., Darling, T. N., de Vries, P. J., … & Young, L. (2021). Updated International Tuberous Sclerosis Complex Diagnostic Criteria and Surveillance and Management Recommendations. Pediatric Neurology, 123, 50-66.

Stuart, C., Fladrowski, C., Flinn, J., Öberg, B., Peron, A., Rozenberg, M., & Smith, C. A. (2021). Beyond the Guidelines: How We Can Improve Healthcare for People with Tuberous Sclerosis Complex Around the World. Pediatric Neurology, 123, 77-84

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 TS-Associated Neuropsychiatric Disorders (TAND) Checklist, Pediatric Neurology (January 2015)

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

Hinton RB et al. Cardiovascular manifestations of TSC 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 TSC 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.