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empower Ensuring our community are informed, connected & supported. WHAT IS Tuberous Sclerosis Complex? Tuberous Sclerosis Complex (TSC) affects hundreds of individuals in New Zealand and thousands more carers, families and friends who live with the impact of the disease. TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no known cure for TSC, but with appropriate support most people with TSC can live fulfilling lives. Read more Our Mission To ensure the New Zealand Tuberous Sclerosis Complex community are informed, connected and supported. Read more latest news Christchurch Coffee Catch-up Oct 11 TSCNZ President Helen Willacy will be at Terra Viva Cafe, 242 Roydvale Avenue, Burnside, Christchurch from 10:30am on Saturday 11th... Sep 17 Congratulations Helen! TSCNZ President, Helen, was nominated for a Rare Disorders 25th Anniversary award. Awards were presented at a special ceremony at... Apr 25 Donate Online DONATE Call us for Questions +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 Mailing list

LEARN About TSC Tuberous Sclerosis Complex (TSC) affects hundreds of individuals in New Zealand and thousands more carers, families and friends who live with the impact of the disease. TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no known cure for TSC, but with appropriate support most people with TSC can live fulfilling lives. #IAMTSC "What Is TSC?" PSA Play Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied TSC affects everyone differently One of the reasons Tuberous Sclerosis is difficult to understand is because it is such a diverse condition. Every child is an individual and not every person affected by TSC will have all of the signs or symptoms. Symptoms of TSC are also seen in varying degrees in each child. Recent improvements in treatment of TSC and its symptoms (particularly in seizure control) mean that the outcome for babies born today is often better that in previous generations. There is currently no way to predict which individuals will be severely affected by the symptoms of TSC and which will be mildly affected. Lifelong surveillance and management of symptoms as they arise is very important. The signs and symptoms of Tuberous Sclerosis Complex The common features that are characteristic of TSC are listed below: Brain Many different types of non-cancerous growths (tumours or lesions) may occur in the brain. About 50% of people with TSC have an IQ in the normal range. Individuals with TSC can have clinical features such as epilepsy (seizures), learning disabilities, intellectual impairment, autism spectrum disorders and sleep disorders. There is a wide range of severity of these symptoms.The neuro-psychiatric aspects of TSC are referred to as TAND – Tuberous Sclerosis Associate Neuro-psychiatric disorders. Infantile spasms are a common and potentially catastrophic seizure type in babies with TSC which can be hard to identify. Infantile spasms should be considered a medical emergency and prompt diagnosis and treatment in critical. This video shows part of a cluster of infantile spasms. Go to http://www.tsalliance.org/infantilespasms for more information on infantile spasms. Useful links: Video of Dr Claire Spooner and Dr Melinda Nolan's TSC and Epilepsy Session at TSCNZ National Conference May 2023 Video of Dr Lisa Underwood's presentation on Managing TAND at the TSCNZ National Conference 2023 . Video of Neurology Session at the 2014 TSC Family Conference in Auckland Video of Lisa Underwood, TSCNZ committee member's presentation on Understanding and Diagnosing TSC Associated Neuro-psychiatric Disorders (TAND) at the 2015 Australian Tuberous Sclerosis Conference Skin Multiple white patches (hypopigmented macules) on the skin are often the first sign of TSC. Other skin rashes may develop with time, but none of these skin symptoms cause serious medical problems. Several New Zealanders are using Sirolimus cream to treat facial angiofibromas. Funding can be available through a prescribing doctor's application for NPPA funding . Consumers may have to pay a small compounding fee. Video of Tuberous Sclerosis and the Skin, including emerging treatments for facial angiofibromas from the 2014 TSC Family Conference in Auckland Heart Rhabdomyomas are growths that occur in the heart muscle. These often do not cause any medical problems and generally shrink with age. Very occasionally, surgery is required if the growth is blocking blood flow. Kidneys Cysts and growths can occur in the kidneys. The most common type of kidney (renal) growth is called an angiomyolipoma or AML. These can sometimes cause kidney problems and there is a slightly increased risk of kidney cancer in people with TSC. A very small number of people also have another renal condition, called polycystic kidney disease as well as TSC. Video of Dr Murray Leikis and Dr Leila Arnold's presentation on TSC and the Kidneys and Transitiion to Adult Services at the TSCNZ National Conference 2023 Video of Tuberous Sclerosis Complex and the Kidneys at 2014 TSC Family Conference in Auckland Lungs Cysts can occur in the lungs. This is called lymphangioleiomyomatosis (LAM) of the lung. LAM may not cause any problems or may cause shortness of breath requiring medical attention. LAM affects about 30% of women with TSC, and is seen only very rarely in men. Eyes Benign tumours called harmatomas can occur at the back of the eye (retina). These generally do not affect vision. Surveillance and Management of Tuberous Sclerosis Complex There is no cure yet for TSC, but the symptoms can be treated or managed. Regular surveillance to look for symptoms and early treatment are associated with better health and quality of life for people with TSC. In 2021, the International Tuberous Sclerosis Complex Consensus Group reviewed prevalence and specificity of TSC-associated clinical manifestations and updated the TSC criteria for diagnosis, surveillance and management published in 2013. You can read more about the diagnostic criteria and surveillance recommendations here at Tuberous Sclerosis Australia's website. For individuals who are not healthcare professionals, below is a brief summary of the consensus recommendations for monitoring individuals with TSC. The updated diagnostic criteria for TSC is available here. You can also get a printable pdf of both the diagnostic criteria and the surveillance and management guidelines by clicking here . View this talk on The Updated International TSC Surveillance and Management Guidelines by Dr Darcey Krueger at Tuberous Sclerosis Australia's event in 2021 for more information about surveillance and management of TSC. Genetics of Tuberous Sclerosis Complex TSC is genetic but not necessarily inherited from a parent. In about 70% of cases TSC has come as the result of a new genetic mutation, and no one else in the family is affected. It may be important for parents or siblings to find out whether they also have the TSC gene because anyone with the gene has a 1 in 2 chance of passing it on to their children. Genetic counselling is recommended for all families with TSC. In New Zealand, genetic counselling is provided by the Genetic Health Service . Video of Dr Juliet Taylor's TSC and Genetics at the TSCNZ National Conference 2023 This video from the 2015 Australian Tuberous Sclerosis Conference provides a thorough explanation of the genetics of TSC and reproductive options available. Need to know more? We recommend these websites for more in-depth information about TSC symptoms and treatments: Tuberous Sclerosis Australia Tuberous Sclerosis Alliance (USA) Tuberous Sclerosis Association (UK) Tuberous Sclerosis Complex International Donate Online DONATE Call us for Questions +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

SUPPOrT US DONATE or JOIN TODAY! BECOME A TSCNZ MEMBER! In our bid to fulfil our mission to inform, connect and support the TSC community in New Zealand, we invite you to become a financial member of Tuberous Sclerosis Complex NZ! For an annual Donation, You'll support the work of our organisation to help in the following ways: Provide email and phone support for TSC affected individuals, families and healthcare professionals Hold conferences and seminars for families and healthcare professionals Advocate to improve access to best practice care Maintain an up-to-date website of TSC related information and resources Publish an email newsletter Host a Facebook page at www.facebook.com/TSCNZ Support TSC research activity in NZ TSC HEROES Fundraising for TSCNZ? You can set up a page on Givealittle here: https://givealittle.co.nz/org/tscnz/fundraise Download our fundraising information sheet to print or send out. Score a free T-shirt by signing up to be a TSCNZ Hero Fundraiser! TSCNZ Heroes use their talents or put their bodies to the test by completing a fitness challenge and raising money for people living with TSC. Whether you choose to run, walk, cycle, swim, bake or make sushi, YOU can make a difference. Read about some of our TSC Heroes: Tom Bear The Willacys Frances & Michael Nic You may choose to do your own thing or you could sign up to join an official event like Round the Bays. Whatever you choose we are here to help and support your efforts. To sign up today you can either visit givealittle to register as an online fundraiser or fill in the form below and we will be in touch. Please let us know what size TSC Heroes t-shirt or singlet to send you as our way to thank you for signing up to be a hero for people living with TSC. You are also very welcome to purchase some merch. Go to tscnz.digitees.co.nz to check out the options. 10% of every sale goes towards fundraising for TSCNZ. These T-shirts are great for the everyday heroes living with TSC or friends and family who would like to show their support. There are also drink bottles, a cap and even a gorgeous baby onesie! Send Thank you! We will get back to you soon. Donations of over $5 are eligible for a New Zealand charitable giving tax credit. VOLUNTEER! Tuberous Sclerosis Complex New Zealand is primarily run by volunteers and there are many opportunities to get involved. Most work is done from home and meetings are by teleconference, so geography is no barrier. Perhaps you could contribute through one of these ongoing volunteering roles: Management Committee members: The committee meets bi-monthly usually by video conference and directs the activities of TSCNZ. Local activities: Organising events locally to connect with TSC families in your area. Fundraising: Every effort, big or small, helps. We can support you through provision of posters, printed material, receipting for tax purposes and ideas to get you started. Send Thank you! We will get back to you soon. Bequests No matter how small, leaving something to TSCNZ will really make a difference for New Zealanders living with TSC. When you include a bequest in your will, you have the option of leaving a specific amount, an item or a percentage of your estate to TSCNZ. It is important to consult your solicitor, Guardian Trust or Public Trust office for advice in drawing up your will. Bequests for 'General Purposes' allow us to use these gifts where most needed. A thoughtful way to honour someone whose life has been affected by TSC is to ask family and friends to make a donation in their memory, or in lieu of flowers. These generous, encouraging donations help fund our work for all those who live with TSC. To find out how to go about this, or if you would like more information about making a donation or bequest to TSCNZ, please email info@tsc.org.nz or call us on 021 154 7017. In Memory of a loved one Donate TSC-Heroes Donate Online DONATE Call us for Questions +64 21 154 7017 Volunteer Your Time We'd love to hear from you and suggest effective ways you can assist our organisation! info@tsc.org.nz

Home What is TSC? Who are we? TSC Stories Support Us & TSC Heroes Newsletters & Resources Events News Contact More CONNECT WITH US TODAY No matter the question, we'd love to hear from you! +6421 154 7017 info@tsc.org.nz Send us a message using this form or sign up to our mailing list below Send Thanks! Message sent. Donate Online DONATE Call us for Questions +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

#TATTS4TSC Register your fun event Do something fun and get a tattoo to raise awareness and funds for tuberous sclerosis complex (TSC). Don’t worry, they’re just temporary! You can join this year’s TSC Global Awareness Day celebrations by joining our #Tatts4TSC campaign. We are partnering with TS Australia in this very cool initiative. Register to order your tattoos and organise a morning tea at your work, school, playgroup or home with T ea and Sc ones (get it!?) or your own specialty. Collect a gold coin from each guest to support TSCNZ’s work. Getting involved is easy: Talk to your workplace about holding a gold coin morning tea on the 15th May. Or you could host an event at home with friends and family, playgroup or school. Register your event here . Send an email to your colleagues or friends letting them know what’s happening and when. On May 15, decorate the event space, take your collection tin and temporary tattoos and talk to your colleagues and friends about TSC and why we need their help. Donate the funds raised to TSCNZ by making a direct deposit to our bank account or donate online using a credit card. Everyone who registers an event gets 10 free temporary tattoos to share with their supporters to raise awareness about TSC. Get in quick to secure yours. Go Social ~ We’d love to see photos of your events and of you wearing your tatts on Twitter and Facebook . Use the #Tatts4TSC hashtag and tag us @TSC_NZ Why the wave? You’ll notice our temporary tattoo design features a wave. People living with TSC liken their journey to riding waves. There are highs and lows and unpredictable tides that threaten to tow you under. We believe that even though we often can’t control the TSC waves, we can learn to surf. Everyone who supports #Tatts4TSC can wear their temporary tattoo with pride, knowing they’ve helped someone with TSC learn to ride the waves. If organising an event is not your thing... You can still join us by purchasing a temporary tattoo. Tattoos are priced at five for $20 (including postage). Or make a donation to support our work in celebration of TSC Global Awareness Day. Donate Donate Online DONATE Call us for Questions +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

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 Sign up to our mailing list to receive newsletters by email 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 Go to What is TSC? for more resources Newsletters: 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 From Conferences: Videos TSCNZ Conference 2023 Videos TSC National Conference 2018 Genetics Presentation Powerpoint August 2025 AGM: TSCNZ Performance Report and Review Previous AGM: TSCNZ 2024 Performance Report/Review TSCNZ 2023 Performance Report/Review TSCNZ 2022 Performance Report Browse 2021 Documents... Browse 2020 Documents... 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 . You can also find us on LinkedIn, Instagram and Twitter/X. Social 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 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 Presentations 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 y our 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 Diagnos tic 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. Donate Online DONATE Call us for Questions +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

TSC Stories A big thank you to the New Zealanders affected by TSC who have kindly shared their stories with us: Leah | Helen | Lisa | Tom Whether you live with TSC or have family/friends with TSC, we would love to hear from you. Your story can be in any format; record a video or audio file, write some text, or get creative and send a picture, artwork or piece of music. Let us know if you're happy for us to include your name or prefer to remain anonymous. Send your submissions to info@tsc.org.nz Leah's story Leah is a founding member of TSCNZ is on the Management Committee. In this video, Leah shares her journey of living with TSC, what the support of the community means to her and how she gives back through voluntary work and supporting others. You contact Leah via info@tsc.org.nz and watch more of Leah's videos about TSC here: Leah Bos - YouTube The start of our journey When our first child, Mac, was about three months old, he started doing funny twitches before he went to sleep. I asked the Plunket nurse. about them at our regular check-up; she dismissed my concerns assuring me they were nothing to worry about. There was no recommendation that we visited our GP if we continued to be concerned. I was quite happy to take to her advice. However, my husband was more cautious. He took Mac to our GP and the seizure word was mentioned for the first time. At this stage we did not know anything about epilepsy. That GP gave us the great advice to try to video the episodes. It was not hard to find an episode to video as he was having them several times a day. Helen's story (2016) Helen is the President of TSCNZ, she was one of those who established the charity back in 2014, she has an adult son with TSC. These slides have been adapted from a journal article written by Helen in 2016 and published in Advances in Autism, describing her family’s TSC journey. Read Helen's 2025 update below. You can contact Helen at president@tsc.org.nz Helen's update (2025) It's interesting to read this piece from a decade ago and reflect on what has changed since then. I'm proud to say that Mac went on to Victoria University after finishing high school where he completed a Bachelor of Design majoring in Design for Social Innovation despite the challenges Covid brought. He lives independently in Wellington and works as a swim teacher. He is about to embark on his next adventure after winning a position as a camp counsellor in Vermont. Health-wise, he came off seizure medications when he was 16 and has been seizure free since. This meant he could achieve the dream of gaining his full drivers license. He does now have kidney involvement and is on sirolimus to manage this. After feeling like my career had taken a back seat due to my caring responsibilities, I did eventually get back into teaching and believe my experiences with TSC have made me a more empathetic teacher. Now with a near empty nest, I am embarking on a career change by building on my experiences as a parent of a child with TSC, TSC advocate and my career in education by training to be a Genetic Counsellor. So far, I'm loving the course and looking forward to the next chapter in our lives. Lisa's story (2018) Lisa joined the TSCNZ Management Committee in 2015, she is now our Community Organiser. In this video, Lisa talks about how she became involved with TSC through her research work in the UK and how she came to be on the TSCNZ Commitee. You can contact Lisa at lisa@tsc.org.nz and watch other videos of her presenting research here: Understanding and diagnosing TSC Associated Neuropsychiatric Disorders (TAND) - Lisa Underwood Lisa Underwood Managing TAND COMPASS Research UoA - YouTube Lisa's update (2025) Lisa is still working at the University of Auckland and in 2024 received a Lived Experience grant from Ember Korowai Takitini to carry out a research project on the impact of rare disorders in Aotearoa New Zealand in collaboration with Rare Disorders New Zealand. Tom's story Tom joined the TSCNZ Management Committee in 2021, he is now our Secretary and social media guru. In this video, Tom talks about his sister Jo who lived with TSC and the importance of TSCNZ to the community. You can contact Tom at secretary@tsc.org.nz and check out his TSCNZ posts on our Instagram Tom Lisa Helen Leah

about tscnz our History Tuberous Sclerosis Complex New Zealand (TSCNZ) was formed in 2014 by a group of dedicated volunteers with personal connections to TSC. Prior to 2014, we were part of the Australasian Tuberous Sclerosis Society (ATSS) which is now known as Tuberous Sclerosis Australia . When ATSS wanted to host a family conference in New Zealand, it became apparent that it was necessary to establish a New Zealand charity to ease the organisation of the conference and to further the goals of individuals and families living with TSC in New Zealand. TSCNZ was formed as an unincorporated society and was granted Charities Commission approval in June 2014. Follow this link to the rules of the organisation. TSCNZ was officially launched at the 2014 TSC Family Conference by the Honourable Peseta Sam Lotuliga, Associate Minister of Health. TSCNZ continues to work closely with Tuberous Sclerosis Australia and is a member organisation of Tuberous Sclerosis Complex International. TSCNZ is run by a management committee of volunteers and are well supported by other volunteers who provide support through the Discussions of Tuberous Sclerosis in Australia and New Zealand Facebook page , fund-raising, website management, graphic design (Kate Sutherland) and book-keeping. A number of clinicians act as medical advisors to TSCNZ. We are very grateful to our founding donors whose generosity has ensured TSCNZ has a secure financial base. Founding Donors Boakes Family | Comer/Lucinsky Family | DE and O Carter | Leah Bos | Leikis Family | Jairam Family R M Morton | Willacy Family Management Committee 2024/2025 Read our 2025 Annual report Helen Willacy (President) Tom Maling (Secretary) Julianne Managh (Treasurer) Leah Bos Frances Morton Lisa Underwood Find out more about members of the committee and how they became involved with TSCNZ on our TSC Stories page . The Management Committee welcome input from the TSC community. They can be reached at info@tsc.org.nz or 021 154 7017. The AGM is held in July or August each year. Community organiser 2025 Lisa Underwood (lisa@tsc.org.nz ) Policies Privacy Policy Working with Pharmaceuticals Companies Policy Other organisations we work with TSCNZ is a member of: We have close relationships with: We also work with : We have received donations or funding from : SUPPORT US TODAY Donate Online DONATE Call us for Questions +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

UPCOMING Events 2026 TSCNZ family conference watch this space! The management committee are looking at planning our next national conference in Christchurch in October 2026 so we would really appreciate some ideas about venues, speakers, funders and any other local knowledge. Please email info@tsc.org.nz if you have any suggestions. Coffee catch-up in Christchurch October 11 from 10.30am TSCNZ President Helen Willacy will be at Terra Viva Cafe, 242 Roydvale Avenue, Burnside, Christchurch from 10:30am on Saturday 11th October and would love to meet up with Canterbury based individuals and families living with TSC for a coffee and a chat. TSCNZ Annual general meeting 2025 The Annual General Meeting of the Society was held on Monday 4th August 2025. 2025/2026 Office Holders: President - Helen Willacy, Secretary - Tom Maling, Treasurer - TBC We teamed up with Rare Disorders NZ for some joint picnics/get togethers. It was lovely to meet families affected by TSC and other rare disorders. In Auckland, TSCNZ Committee member and Secretary Tom was joined by Rare Disorders NZ Board Chair James. Helen and Leah were joined by families from the Waikato in Tirau. Earlier, Community Organiser Lisa attended the Rare Disorders NZ 25th Anniversary Awards Ceremony and was a judge at the Rare Beer Challenge. March 2025 TSCNZ & Rare Disorders NZ Glow Up Show Up events Visit our Facebook page to view what we have in store these upcoming months! Snaps of our TSCNZ family & previous events Donate Online DONATE Call us for Questions +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

TSC National Conference 2023 Register Now Join us at this wonderful opportunity for individuals, families and professionals in the Tuberous Sclerosis Complex community to network and learn more about TSC. Learn more about TSC from a range of medical professionals and those with lived experience. To date we have speakers confirmed on TSC and the kidneys, transition, neurology and TAND. A full programme will be released in early 2023. This conference provides a unique opportunity for TSC-affected families and adults to hear from and ask questions of expert TSC health professionals and to connect with and learn from each other. Feedback from our last national conference in 2018: "We found that learning the latest in knowledge about TSC that has been researched and experienced was really interesting." "Thanks for holding and organising this year's conference, I have come away a lot more informed of TSC and what steps to take for ongoing management. A great bunch of people and we look forward to attending the next one." "So important and valuable to connect with other families!!!" "The guest speakers' subjects were relevant and they were open to questions which was great." FAQs Where and When? Auckland CBD – Mezzanine and Kahurangi Room, Parkside Hotel & Apartments, 100 Greys Avenue, Auckland, 1010 9.00am – 5.30pm – includes morning tea, lunch and afternoon tea. Optional conference dinner to follow. There will be time for questions and plenty of refreshment breaks. What are my transport/parking options for getting to and from the event? Parks are available for those staying at the venue. The Civic Car Park is close by. The venue is also on public transport links. Visit www.at.govt.nz to plan your route or download the AT mobile app. How can I contact the organiser with any questions? Contact info@tsc.org.nz or visit our facebook page www.facebook.com/TSCNZ/ What does the conference fee cover? The event fee of just $45 will cover catering on the day and processing fees. The event has otherwise been funded by donations and grants to TSCNZ. Speakers have generously volunteered their time to speak at this event. If you would like to attend the conference dinner at nearby Joy Bong Thai Restaurant & Bar there is an additional cost of $50. This is also subsidised by our generous sponsors. Please email info@tsc.org.nz to let us know of dietary requirements. How can I pay? Click on this link to register through Eventbrite. You can pay by credit/debit card, or online. If you would like to pay by online banking, select the "cheque" option on the payment method drop down menu and the instructions for payment will pop up. Can I get financial assistance? Yes, TSCNZ has received a grant from Christchurch Casinos Charitable Trust and other generous donations to provide travel and accommodation grants for those needing to travel to attend the Auckland event. South Islanders are eligible for up to $600 pp. North Islanders are eligible for up to $400 pp. For information on support with travel and accommodation costs or for other requests for financial support to attend the event in Auckland, please email info@tsc.org.nz . Follow this link for more information about travel grants. There are a limited number so please apply as soon as possible. Please contact TSCNZ if the registration fees are a barrier to attending the conference. There may be some sponsorship available. What's the refund policy? Attendees can receive refunds up to 7 days before the event. We realise life with TSC can throw curve balls and a refund may be able to be given closer to the event at the organisers' discretion. Is there access for people with physical disabilities? Yes. Please let us know if additional support is required. What accommodation options are nearby? Parkside Hotel and Apartments has accommodation available. Please contact them to book. Alternatively, the CBD has a large range of accommodation options available. It is advisable to book early as supply is limited. Please spread the word to your family, colleagues and contacts in the TSC world. See you in Auckland 2023! Register Now Donate Donate Online DONATE Call us for Questions +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