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TSCNZ Publications 

to download

Parachute Packs:

Unborn Child - Likely Diagnosis

Child - New Diagnosis

Adult - New Diagnosis

Information for Health Professionals

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Useful Resources:

3 fold Brochure

Surveillance and Management Guidelines

TAND checklist

Parent and Caregivers Guide

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Newsletters:

2023: 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

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From Conferences:

        Videos TSCNZ Conference 2023

Videos TSC National Conference 2018

Genetics Presentation Powerpoint

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August 2023 AGM:

        TSCNZ Performance Report and Review

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August 2022 AGM:

       TSCNZ Performance Report

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July 2021 AGM:

        Browse Documents...

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July 2020 AGM:

        Browse Documents...

        Sirolimus Presentation

Latest Newsletter

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. You can also find us on LinkedIn, Instagram and Twitter/X.

Useful Websites within Nz

 

Carers New Zealand

CCS Disability Action

Disability Connect

Epilepsy New Zealand

Foetal Anti-Convulsant Syndrome New Zealand

Health and Disability Commission

Hopeworks

IHC

Imagine Better

My Care

Ministry of Health

Rare Disorders New Zealand

Parent to Parent New Zealand

Starship Children's Health

Wilson Home Trust

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.

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International consensus recommendations for the identification and treatment of tuberous sclerosis complex-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.

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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

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

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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)

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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)

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

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

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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).

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

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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.

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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.

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Call us for Questions

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+6421 154 7017

Volunteer Your Time

We'd love to hear from you and suggest effective ways you can assist our organisation!

 

info@tsc.org.nz​

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