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# The TAND consortium

Empowering families through technology

## Sitemaps

- [XML Sitemap](https://tandconsortium.org/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [Dutch translation of the family-focused introduction to the TAND consensus recommendations is now available!](https://tandconsortium.org/dutch-tand-consensus-recommendations/) - We are please to announce that the family-focused introduction to the TAND consensus recommendations is now available in Dutch.
- [Family-focused introduction to the TAND consensus recommendations](https://tandconsortium.org/family-focused-introduction-to-the-tand-consensus-recommendations/) - We are excited to present a 2-page family-focused introduction to the published international consensus recommendations for the identification and treatment of Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders (TAND)!
- [TAND consortium member Robert Waltereit promotes TSC and TAND in Würzburg!](https://tandconsortium.org/robert-waltereit-promotes-tsc-and-tand-in-wurzburg/) - Thank you to Dr Robert Waltereit who recently spoke about the role of Child and Adolescent Psychiatry in TSC at the DCKJP Congress in Würzburg, Germany.
- [TAND Toolkit App registrations reach 100!](https://tandconsortium.org/tand-toolkit-app-registrations-reach-100/) - We are delighted to announce that over 100 TSC family members from 16 different countries have been registered on the TAND Toolkit App as part of the TANDem-2 project! This study is using the TAND Toolkit App to learn about how TAND severity changes over time. A big thank you to all the individuals with TSC and their caregivers for helping us collect this information on the app. Check the World Tracker and see if you can put your country on the TANDem-2 project map!
- [Testimonials about using the TAND Toolkit App in the TANDem-2 project](https://tandconsortium.org/testimonials-about-using-the-tand-toolkit-app-in-the-tandem-2-project/) - Adults with TSC or family caregivers are asked to complete information in the app for the TANDem-2 project. Listen to these family members sharing their experience using the TAND Toolkit App for the first time.
- [The 2026 TAND Mini-Symposium recording is now available!](https://tandconsortium.org/the-2026-tand-mini-symposium-recording-is-now-available/) - A very big thank you to the ten presenters and almost 70 attendees who made the 2026 TAND Mini-Symposium such an interesting and stimulating event! The recording of the afternoon is now available for viewing for those who couldn't make it.
- [TANDem-2 project protocol paper now available!](https://tandconsortium.org/tandem-2-project-protocol-paper-now-available/) - We are delighted to share with you the publication of the TANDem-2 project protocol that was recently published in the Journal of Medical Internet Research (JMIR) Research Protocols.
- [TAND Mini-Symposium 2026](https://tandconsortium.org/tand-mini-symposium-2026-recording/) - The programme for the 2026 Mini-Symposium covered a range of topics including: TAND mechanisms, TAND measurement and ethical challenges in TSC care; the impact of TAND on family life and caregiver experiences, including sleep management difficulties, psychosocial aspects in Brazil, and the TSC and TAND landscape in India; and, potential TAND interventions, including medicinal cannabis, supporting caregiver wellbeing, regulating together, and a novel neuropsychological intervention.
- [Join the 2026 TAND Mini-Symposium!](https://tandconsortium.org/join-the-2026-tand-mini-symposium/) - We are pleased to invite you to the 2026 TAND Mini-Symposium which will be held online on 7 May 2026 from 14:00–16:00 CET. This event will bring together members of the TAND community to share updates, ideas, and ongoing work related to TAND research and care. Please follow the instructions to register in advance.
- [TSC-Associated Neuropsychiatric Disorders (TAND)](https://tandconsortium.org/tsc-associated-neuropsychiatric-disorders-tand-tsc-ireland/) - Petrus de Vries presented a talk on TSC-Associated Neuropsychiatric Disorders (TAND) at the TSC Ireland Conference held on 31 October 2025 at Trinity College Dublin.
- [Ukranian TAND-SQ Checklist now available!](https://tandconsortium.org/ukranian-tand-sq-checklist-now-available/) - We are delighted to announce that the Ukranian version of the TAND-SQ is now available on the TAND consortium website!
- [Extended deadline: Abstract submission open until 20 April for the TAND Mini-Symposium on 7 May 2026](https://tandconsortium.org/tand-mini-symposium-2026/) - The TAND consortium is pleased to invite abstract submissions for the third online TAND Mini-Symposium, to be held online on 7 May 2026 from 14:00 to 17:00 CET. Abstract submission opens on 9 March 2026 and closes on 20 April 2026.
- [Join TANDem-2: the TAND Toolkit App is now live!](https://tandconsortium.org/tand-toolkit-app-now-live/) - We are delighted to announce that the TANDem-2 project is open for participants to register on the TAND Toolkit App and begin tracking TAND over time!
- [TAND Toolkit App Launch Meeting](https://tandconsortium.org/tand-toolkit-app-launch-meeting/) - The launch of the TAND Toolkit App took place on World Rare Disease Day, 28 February 2026. Watch this recording to hear more about the TANDem-2 project and how to register and use the app to track TAND over time!
- [Join us for the launch of the TAND Toolkit App on 28 February 2026](https://tandconsortium.org/launch-of-the-tand-toolkit-app/) - We are delighted to announce that the launch of the TAND Toolkit App as part of the TANDem-2 research study will take place on 28 February 2026 at 14:00 – 15:30 CET in honour of World Rare Disease Day.
- [Mitchell Silva](https://tandconsortium.org/mitchell-silva/) - (2025 - present)
- [Family-focused introduction to the consensus recommendations for TAND](https://tandconsortium.org/consensus-recommendations-for-tand-presentation/) - In this short video aimed at families, Anna Jansen and Petrus de Vries talk through the consensus recommendations presented in the 2-page summary document.
- [SAVE THE DATE: TAND Mini-Symposium 2026](https://tandconsortium.org/save-the-date-tand-mini-symposium-2026/) - We are pleased to announce the date of the online TAND Mini-Symposium 2026 on 7 May 2026 from 14h00 to 17h00 CET.
- [An update on year 2 of the TANDem project](https://tandconsortium.org/an-update-on-year-2-of-the-tandem-project/) - Liesbeth De Waele presents an update of year 2 of the TANDem project at the virtual International TSC Research Conference on 19 July 2021.
- [Celebrating Participatory Research on TAND](https://tandconsortium.org/celebrating-participatory-research-on-tand-presentation/) - Petrus de Vries and Anna Jansen give a summary of the TANDem project at the in-person meeting in South Africa in November 2022.
- [An update on TANDem-1 and TANDem-2 projects](https://tandconsortium.org/update-on-tandem-1-and-tandem-2-projects/) - An update on the TANDem-1 and TANDem-2 projects by Anna Jansen and Petrus de Vries.
- [TANDem Impact Event 2022: Conversations About Tuberous Sclerosis Complex](https://tandconsortium.org/tandem-impact-event-2022-conversations-about-tuberous-sclerosis-complex-presentation/) - Members of the TAND consortium give presentations on various aspects of TAND at the TANDem Impact Event in Stellenbosch, South Africa, in November 2022.
- [2023 TAND Mini-Symposium](https://tandconsortium.org/2023-tand-mini-symposium/) - Our 2023 TAND Mini-Symposium was a great success. You can listen here to presentations on pre-clinical TAND studies, TAND across the lifespan, understanding aspects of TAND, and TAND intervention and services research.
- [Irish TSC Conference, Dublin, 2025](https://tandconsortium.org/irish-tsc-conference-dublin-2025/) - The TSC Conference was a warm, informative and hopeful event which brought families, clinicians and researchers together for two lively days of learning and connection at Trinity College Dublin, Ireland, 31 October - 1 November 2025.
- [LATAM Spanish TAND-SQ Checklist now available!](https://tandconsortium.org/latam-spanish-tand-sq-checklist/) - We are delighted to announce that the LATAM Spanish version of the TAND-SQ is now available on the TAND consortium website!
- [German TAND-SQ Checklist now available!](https://tandconsortium.org/german-tand-sq-checklist/) - We are delighted to announce that the German version of the TAND-SQ is now available on the TAND consortium website!
- [Polish TAND-SQ Checklist now available!](https://tandconsortium.org/polish-tand-sq-checklist/) - We are delighted to announce that the Polish version of the TAND-SQ is now available on the TAND consortium website!
- [Francesca Little](https://tandconsortium.org/francesca-little/) - (2024 - present)
- [Mary Vasseghi](https://tandconsortium.org/mary-vasseghi/) - (2024 - present)
- [Liezl Schlebusch](https://tandconsortium.org/liezl-schlebusch/) - (2024 - present)
- [Micaela Rozenberg](https://tandconsortium.org/micaela-rozenburg/) - (2024 - present)
- [Petrus de Vries](https://tandconsortium.org/petrus-de-vries/) - (2019-present)
- [Naomi Epstein](https://tandconsortium.org/naomi-epstein/) - (2024 - present)
- [Sarah Goy](https://tandconsortium.org/sarah-goy/) - (2024 - present)
- [Jan-Paul Wagenaar](https://tandconsortium.org/jan-paul-wagenaar/) - (2024 - present)
- [Guillaume Beaure d’Augères](https://tandconsortium.org/guillaume-beaure-daugeres/) - (2024 - present)
- [Laís Cardozo](https://tandconsortium.org/lais-cardozo/) - (2024 - present)
- [Spanish (US) TAND-SQ Checklist Released](https://tandconsortium.org/spanish-us-tand-sq-checklist-released/) - ¡Buenas Noticias! We are excited to announce that the Spanish (US) version of the TAND-SQ is now available!
- [International Summer Course in Qualitative Healthcare Research at the University of Antwerp](https://tandconsortium.org/international-summer-course-in-qualitative-healthcare-research-at-the-university-of-antwerp/) - Lucas Gutiérrez Lafrentz, a PhD researcher in the TANDem-2 project, participated in the International Summer Course in Qualitative Healthcare Research at the University of Antwerp during the last week of August, 2025.
- [TAND consortium at SSBP 2025](https://tandconsortium.org/tand-consortium-at-ssbp-2025/) - The TAND consortium participated in the 27th International Research Symposium of the Society for the Study of Behavioural Phenotypes (SSBP). The meeting took place in Amsterdam, The Netherlands from 4-6 September 2025. The conference focused on personalised care for rare genetic disorders.
- [Anna Byars](https://tandconsortium.org/anna-byars/) - (2019-present)
- [Eva Schoeters](https://tandconsortium.org/eva-schoeters/) - (2019-2024)
- [Dena Hook](https://tandconsortium.org/dena-hook/) - (2019-2020)
- [Aubrey Kumm](https://tandconsortium.org/aubrey-kumm/) - (2019-2024)
- [Agnies Van Eeghen](https://tandconsortium.org/agnies-van-eeghen/) - (2019-present)
- [Rebecca Mitchell](https://tandconsortium.org/rebecca-mitchell/) - (2024 - present)
- [Lucas Gutiérrez Lafrentz](https://tandconsortium.org/lucas-gutierrez-lafrentz/) - (2024 - present)
- [TAND-SQ validation findings are published](https://tandconsortium.org/tand-sq-validation-findings-are-published/) - A study exploring the validation of the TAND-SQ scores was recently published in the Orphanet Journal of Rare Diseases.
- [TAND consortium participates in the 2025 TSC International Research Conference, Bethesda, USA](https://tandconsortium.org/tand-consortium-participates-in-the-2025-tsc-international-research-conference-bethesda-usa/) - Numerous members of the TAND consortium recently took part in the 2025 TSC International Research Conference in the Bethesda, USA from 26 to 28 June 2025.
- [EpiCom study: the first commercial clinical trial using the TAND-SQ as outcome measure](https://tandconsortium.org/epicom-study-the-first-commercial-clinical-trial-using-the-tand-sq-as-outcome-measure/) - We are excited to announce the recent publication of a protocol paper for the EpiCom (Epilepsy Comorbidities) study, a multicenter, open-label, phase 3b/4 study, designed in collaboration with patient advisory groups and healthcare professionals. The study is investigating the impact of adjunctive cannabidiol (CBD) treatment on TAND in individuals with TSC-associated seizures.
- [Traditional and Simplified Chinese TAND-L Checklists Released](https://tandconsortium.org/traditional-and-simplified-chinese-tand-l-checklists-released/) - We are very excited to announce the publication of the authorised Chinese versions of the TAND-L Checklist! Two versions - a Traditional Chinese and Simplified Chinese TAND-L Checklist - are now available on the TAND Consortium website.
- [Nola Chambers](https://tandconsortium.org/dr-nola-chambers/) - (2019-present)
- [Carla Fladrowski](https://tandconsortium.org/carla-fladrowski/) - (2024-present)
- [Liesbeth De Waele](https://tandconsortium.org/prof-liesbeth-de-waele/) - (2019-present)
- [Erin Campbell](https://tandconsortium.org/erin-campbell/) - (2024-present)
- [Development of the TAND-SQ Checklist](https://tandconsortium.org/development-of-the-tand-sq-checklist/) - We are delighted to announce that the new checklist, the TAND-SQ, has been developed and is now published in the journal of Pediatric Neurology. The full checklist can be accessed via the article and can be used freely by families and individuals living with TSC.
- [TANDem poster at SSBP 2019](https://tandconsortium.org/ssbp_poster_2019/) - 4 September 2019 TANDem poster at SSBP 2019 We were delighted to present our TANDem poster at the 22nd Society for the Study of Behavioural Phenotypes (SSBP) International Research Symposium in Birmingham, UK. The SSBP is an international, interdisciplinary research society for studying the learning and behavioural problems of individuals with genetic disorders, including TSC.
- [TSC Research Symposium 2020](https://tandconsortium.org/tsc_research_symposium_2020/) - At the International TSC Research Symposium organized virtually on 13th November 2020 an update was given on the first year of the TANDem project.
- [TANDem project - update on year 1](https://tandconsortium.org/tandem-project-update-on-year-1/) - TANDem project - update on year 1
- [TANDem project launch](https://tandconsortium.org/tandem-1-project-launch/) - The TANDem project had a launch meeting in November 2019 which took place at the Katholieke Universiteit Leuven (KUL) from 17–19 November 2019. The meeting was coordinated by Stephanie Vanclooster and hosted by Liesbeth De Waele.
- [Consensus Recommendations for TAND](https://tandconsortium.org/consensus-recommendations-for-tand/) - The TAND consortium set out to develop a set of international consensus recommendations for the identification and treatment of TAND. These focus on the seven natural TAND clusters (Autism-like, Dysregulated behaviour, Eat/Sleep, Mood/Anxiety, Overactive/Impulsive, Neuropsychological, and Scholastic clusters), and an eighth wraparound Psychosocial cluster.
- [Shoba Srivastava](https://tandconsortium.org/ms-shoba-srivastava/) - (2019-present)
- [TAND consortium at INSAR 2025: Presenting New Advances in TAND Research](https://tandconsortium.org/tand-consortium-at-insar-2025-presenting-new-advances-in-tand-research/) - The TAND consortium was well represented at the annual International Society for Autism Research (INSAR) conference, held in Seattle, USA, 30 April – 3 May 2025. Two posters were presented, highlighting exciting developments in the global effort to close the identification and treatment gap for Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND).
- [Sebastián Cukier](https://tandconsortium.org/dr-sebastian-cukier/) - (2019-present)
- [Jamie Capal](https://tandconsortium.org/dr-jamie-capal/) - (2019-present)
- [Robert Waltereit](https://tandconsortium.org/prof-robert-waltereit/) - (2019-present)
- [Vicky Whittemore](https://tandconsortium.org/dr-vicky-whittemore/) - (2019-2020)
- [Tosca Heunis](https://tandconsortium.org/dr-tosca-heunis/) - (2019-present)
- [Tanjala Gipson](https://tandconsortium.org/dr-tanjala-gipson/) - (2019-present)
- [Sugnet Lubbe](https://tandconsortium.org/prof-sugnet-lubbe/) - (2019-present)
- [Stephanie Vanclooster](https://tandconsortium.org/dr-stephanie-vanclooster/) - (2019-2021)
- [Stacey Bissell](https://tandconsortium.org/dr-stacey-bissell/) - (2019-present)
- [Peter Davis](https://tandconsortium.org/dr-peter-davis/) - (2019-present)
- [Mustafa Sahin](https://tandconsortium.org/prof-mustafa-sahin/) - (2019-present)
- [Megumi Takei](https://tandconsortium.org/ms-megumi-takei/) - (2019-present)
- [Katie Smith](https://tandconsortium.org/ms-katie-smith/) - (2019-present)
- [Jennifer Flinn](https://tandconsortium.org/dr-jennifer-flinn/) - (2019-present)
- [Darcy Krueger](https://tandconsortium.org/dr-darcy-krueger/) - (2019-present)
- [Chris Kingswood](https://tandconsortium.org/dr-chris-kingswood/) - (2019-present)
- [Anna Jansen](https://tandconsortium.org/prof-anna-jansen/) - (2019-present)
- [Multidisciplinary TAND consortium meets for TANDem-2 Project Planning Workshop](https://tandconsortium.org/multidisciplinary-tand-consortium-meets-for-tandem-2-project-planning-workshop/) - The TAND consortium met together in Antwerp, Belgium for the multidisciplinary TANDem-2 Project Planning Workshop from 2 - 5 November 2024. The goal of this meeting was to adopt a participatory research approach to plan and prepare for the TANDem-2 project: 'Closing the Gap to Interventions for TAND'.
- [SA-ACAPAP 2024 Poster Presentation](https://tandconsortium.org/sa-acapap-2024-poster-presentation/) - One of our TAND consortium members, and recipient of TSA seed funding, Shoba Srivastava, recently presented a poster at the South African Association for Child and Adolescent Psychiatry and Allied Professions (SA-ACAPAP) conference in Stellenbosch, South Africa, on 7-9 March, 2024.
- [Celebrating Participatory Research on TAND](https://tandconsortium.org/celebrating-participatory-research-on-tand/) - To celebrate TSC Global Awareness Day (15 May), we would like to highlight all the activities of the TANDem project in this compilation of annual reports. We salute all the families who participated across the four years of the project. Thank you for your time and interest in the project - your participation ensured the successful completion of the TANDem project!
- [ICNC 2024 Symposium - Managing the Complexities of TSC](https://tandconsortium.org/icnc-2024-symposium-managing-the-complexities-of-tsc/) - The TAND Consortium was represented recently at the International Child Neurology Congress in Cape Town from 7-10 May. Profs Anna Jansen, Petrus de Vries, Darcy Krueger and Dr Tosca-Marie Heunis all gave talks related to 'Managing the complexities of TSC'.
- [Annual report 2023 released](https://tandconsortium.org/annual-report-2023-released/) - Welcome to the final report on the TANDem project. In this report we will summarise key activities, achievements and celebrations from year 4 of the project and present some overall reflections on our journey with the TANDem project.
- [The TAND Mini-Symposium 2023 - abstracts and recording available!](https://tandconsortium.org/the-tand-mini-symposium-2023/) - Thank you to all our presenters who made the 2023 TAND Mini-Symposium such a great success! We had approximately 80 participants attend the event and engage in fruitful discussions about a wide range of presentations on TAND topics. Read further for access to the abstracts and recording of the event.
- [Celebrating Participatory Research on TAND - TANDem Project](https://tandconsortium.org/celebrating-participatory-research-on-tand-tandem-project/) - On TSC Global Awareness Day (15 May) we celebrate the power of research in partnership with TSC families. Watch this short movie to learn more about the TANDem project.
- [TANDem Impact Event 2022: Conversations About Tuberous Sclerosis Complex](https://tandconsortium.org/tandem-impact-event-2022-conversations-about-tuberous-sclerosis-complex/) - An international group of experts in the TAND consortium met with local families, clinicians and researchers to present up-to-date information on TSC, TAND, the TANDem project, and discussed issues of local interest to participants in round-table discussions.
- [The neuropsychiatry of TSC](https://tandconsortium.org/the-neuropsychiatry-of-tsc/) - A talk presented by Prof. Petrus de Vries on 'The Neuropsychiatry of TSC' at the Australasian TSC Association family conference in Perth, Australia in 2013.
- [The TAND Mini-Symposium 2022](https://tandconsortium.org/the-tand-mini-symposium-2022/) - The TAND consortium hosted an online Mini-Symposium in April 2022. Emerging and established TAND researchers across the globe were invited to submit abstracts for short ‘rapid fire’ presentations on their research.
- [The TAND Mini-Symposium 2022](https://tandconsortium.org/the-tand-mini-symposium-2022/) - The TAND consortium hosted an online Mini-Symposium in April 2022. Emerging and established TAND researchers across the globe were invited to submit abstracts for short ‘rapid fire’ presentations on their research.
- [Consensus meeting](https://tandconsortium.org/consensus-meeting/) - On 9-11 November 2020 a virtual TAND consortium consensus meeting took place to look back on all the work done in the first year of the project, and to set the goals and focus for the next year.
- [Dysregulated behaviours](https://tandconsortium.org/user/) - Self-care is extremely important for caregivers. You must take care of yourself to take care of others. Exercise, therapy, time with friends and family away from loved one with TSC.
- [DCAP presentation](https://tandconsortium.org/dcap-presentation/) - An update on the TANDem project was presented at the annual DCAP (Division of Child and Adolescent Psychiatry) research mini-symposium virtually held on 27th November 2020.
- [IACAPAP poster](https://tandconsortium.org/news-8/) - The TANDem consortium presented an abstract at the 24th World Congress of the International Association of Child & Adolescent Psychiatrists and Allied Professions (IACAPAP) organized virtually in December 2020.
- [Annual report 2021 released](https://tandconsortium.org/annual-report-2021-released/) - The annual report 2021 documents the progress that has been made in the second year of the TANDem project in the context of COVID-19, illustrating the remarkable resilience and ongoing commitment of the TAND Consortium members to the project and its greater goals.
- [Annual report 2022 released](https://tandconsortium.org/annual-report-2022-released/) - In this report we present key milestones over the last year and highlight some important and exciting activities and achievements by the TAND consortium during this period. It was exactly 10 years ago, in 2012, that the term ‘TAND’ (TSC-Associated Neuropsychiatric Disorders) was coined at an international consensus conference in the USA.
- [Introduction to TAND and the TAND Checklist](https://tandconsortium.org/introduction-to-tand-and-the-tand-checklist/) - Introduction to TAND and the TAND Checklist
- [The TANDem project](https://tandconsortium.org/the-tandem-project/) - The TANDem project
- [Annual report 2020 released](https://tandconsortium.org/news-4/) - The first annual report documents the very hard work that has been done in year 1 to get the TANDem project going, encouraged by the dedication and hard work of all TANDem Consortium members, and by the ongoing support and enthusiasm for the project from the global TSC community.
- [Treatment of TAND](https://tandconsortium.org/treatment-of-tand/) - Petrus de Vries discusses the treatment of TAND at the Belfast TAND conference, 25 January 2019.
- [Introduction to TAND](https://tandconsortium.org/introduction-to-tand/) - Petrus de Vries gives an introduction to TAND at the Belfast TAND conference, 25 January 2019.
- [TAND: setting the scene](https://tandconsortium.org/tand-setting-the-scene/) - TAND: setting the scene
- [Dysregulated behaviours](https://tandconsortium.org/tip-1/) - “Track ABC data (A = antecedents; B = behaviour; C = consequences). Many families are still using that data as it helps to try to identify “root” problems to behaviours. This data should be shared with the team as you work to find a balance of behavioural services and medication.”
- [Active participation in clinical consultations](https://tandconsortium.org/tip-2/) - “Since my children were old enough to talk, I have tried to include them in doctor appointments with their neurologist or the pediatrician. To engage them and guide them to self-advocate. I would not want them to zone out through the years while adults are talking and then one day tune in and have to be part of the conversation. I imagine this toolkit could be an easy source to help him self-advocate and to learn or digest more of TAND clusters that he may identify with.”
- [Dysregulated behaviours](https://tandconsortium.org/tip-3/) - “Like I mentioned, devices are an issue for us. My son can be engaged, focused, happy, pleasant if he does not have any device time. If he does have some device time (either gaming or TV, 20min or 2hrs), he is irritable, does not focus, can disengage himself from us, seems to pretend play in his mind. I’d like to get an understanding of what is happening in his brain. To identify what is being triggered to cause such a different personality? And then how can we help him self-regulate. I have some tricks to try to help him and we strongly limit his device time… Devices are the only thing that trigger this negative mood and it’s a drastic difference from his normal sweet manner.”
- [Publication 3](https://tandconsortium.org/publication-3-2/) - Lorem ipsum dolor sit amet, consectetur adipiscing elit. Pellentesque a tortor facilisis, sollicitudin dui ac, gravida tortor. Quisque sed nisi vitae justo elementum lacinia non in ex. Suspendisse laoreet magna quis lectus varius, vitae porta risus porttitor. Lorem ipsum dolor sit amet, consectetur adipiscing elit.
- [Meeting 1](https://tandconsortium.org/meeting-1/) - Meeting 1 “This project has the potential to transform the landscape for TAND identification and intervention at a global level. Given that the study is designed in partnership with families and a wide range of multi-stakeholders, its impact will be direct, immediate, ongoing and relevant.” Prof Petrus de Vries and Prof Anna Jansen.
- [Event 1](https://tandconsortium.org/event-1/) - Event 1 admin-tandem November 3, 2020 7:10 am No Comments “This project has the potential to transform the landscape for TAND identification and intervention at a global level. Given that the study is designed in partnership with families and a wide range of multi-stakeholders, its impact will be direct, immediate, ongoing and relevant.” Prof Petrus
- [Event 2](https://tandconsortium.org/event-2/) - Lorem ipsum dolor sit amet, consectetur adipiscing elit. Pellentesque a tortor facilisis, sollicitudin dui ac, gravida tortor. Quisque sed nisi vitae justo elementum lacinia non in ex. Suspendisse laoreet magna quis lectus varius, vitae porta risus porttitor. Lorem ipsum dolor sit amet, consectetur adipiscing elit.
- [Event 3](https://tandconsortium.org/event-3/) - Lorem ipsum dolor sit amet, consectetur adipiscing elit. Pellentesque a tortor facilisis, sollicitudin dui ac, gravida tortor. Quisque sed nisi vitae justo elementum lacinia non in ex. Suspendisse laoreet magna quis lectus varius, vitae porta risus porttitor. Lorem ipsum dolor sit amet, consectetur adipiscing elit.
- [Publication 2](https://tandconsortium.org/publication-2/) - Lorem ipsum dolor sit amet, consectetur adipiscing elit. Pellentesque a tortor facilisis, sollicitudin dui ac, gravida tortor. Quisque sed nisi vitae justo elementum lacinia non in ex. Suspendisse laoreet magna quis lectus varius, vitae porta risus porttitor. Lorem ipsum dolor sit amet, consectetur adipiscing elit.
- [Meeting 2](https://tandconsortium.org/meeting-2/) - Lorem ipsum dolor sit amet, consectetur adipiscing elit. Pellentesque a tortor facilisis, sollicitudin dui ac, gravida tortor. Quisque sed nisi vitae justo elementum lacinia non in ex. Suspendisse laoreet magna quis lectus varius, vitae porta risus porttitor. Lorem ipsum dolor sit amet, consectetur adipiscing elit. In hac habitasse platea dictumst. Lorem ipsum dolor sit amet,
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## Pages

- [HOME](https://tandconsortium.org/) - About the TAND consortium Welcome to the website of the TAND consortium. The TAND consortium is a group of stakeholders in the Tuberous Sclerosis Complex (TSC) community brought together by Prof. Anna Jansen and Prof. Petrus de Vries to address important gaps in Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND) research. TSC is a genetic
- [TAND Consensus Recommendations](https://tandconsortium.org/resources/tand-consensus-recommendations/) - TAND Consensus Recommendations Home » Resources » TAND Consensus Recommendations Family-focused introduction to the TAND consensus recommendations In this video Anna Jansen and Petrus de Vries introduce the TAND consensus recommendations to families Our family representatives Katie Smith and Jan-Paul Wagenaar, along with the TAND consortium, prepared a 2-page summary document of these consensus recommendations
- [Resources](https://tandconsortium.org/resources/) - Resources Home » Resources » TAND Consensus Recommendations TAND Recommendations Go to Recommendations TAND Checklists Go to Checklists Featured Presentations View all presentations TAND Mini-Symposium 2026 The programme for the 2026 Mini-Symposium covered a range of topics including: TAND mechanisms, TAND measurement and ethical challenges in TSC care; the impact of TAND on family life
- [About](https://tandconsortium.org/about/) - About Home » Resources » TAND Consensus Recommendations TSC Tuberous Sclerosis Complex, abbreviated to ‘TSC’, is a rare genetic disorder. It is caused by mutations in the genes TSC1 or TSC2 that produces the proteins hamartin and tuberin respectively. TSC affects approximately 1 in 6000 individuals involving all racial and ethnic groups. That means that
- [Join TANDem-2](https://tandconsortium.org/join-tandem-2/) - TANDem-2: Closing the gap to interventions for TAND Home » Resources » TAND Consensus Recommendations Click here to join the TANDem-2 project now! Join the TANDem-2 study Thank you for your interest in the TANDem-2 study! Here you will learn more about this research project, how you can join the study, and how you can
- [How to use the app](https://tandconsortium.org/join-tandem-2/how-to-use-the-app/) - TANDem-2: Closing the gap to interventions for TAND Home » Resources » TAND Consensus Recommendations How to use the TAND Toolkit App In this section you can find helpful and informative videos and infographics on how to use the app. How to register and use the TAND Toolkit App This guide provides you with an
- [Frequently asked questions (FAQs)](https://tandconsortium.org/join-tandem-2/frequently-asked-questions/) - TANDem-2: Closing the gap to interventions for TAND Home » Resources » TAND Consensus Recommendations Frequently asked questions (FAQs) Study procedures What will I need to agree to if I join the study? You will need to agree that: You understand what the study is about. You are over 18 and either have TSC or
- [App user testimonials](https://tandconsortium.org/join-tandem-2/app-user-testimonials/) - TANDem-2: Closing the gap to interventions for TAND Home » Resources » TAND Consensus Recommendations App user testimonials Below you can watch testimonials given by caregivers of individuals with TSC who have joined the TANDem-2 project and started tracking their loved one’s TAND journey over time.
- [Recruitment materials](https://tandconsortium.org/join-tandem-2/recruitment-materials/) - TANDem-2: Closing the gap to interventions for TAND Home » Resources » TAND Consensus Recommendations Recruitment materials Here you can download the ‘TANDem-2 project recruitment flyer’ to share and distribute in your TSC community, available in PDF and PNG formats. TANDem-2 recruitment flyer [PDF] TANDem-2 recruitment flyer [PNG] How to register and use the app
- [About the TANDem-2 Study](https://tandconsortium.org/join-tandem-2/about-the-study/) - TANDem-2: Closing the gap to interventions for TAND Home » Resources » TAND Consensus Recommendations About the TANDem-2 study This study focuses on the neuropsychiatric challenges most people with Tuberous Sclerosis Complex (TSC) experience called TAND. These can be very stressful for individuals with TSC and their families. In our first research study (TANDem-1), we
- [All publications](https://tandconsortium.org/all-publications/) - All Publications Closing the Gap to Interventions for Tuberous Sclerosis Complex–Associated Neuropsychiatric Disorders (TAND): Protocol for a Longitudinal Study of TAND Severity, Predictors, and Caregiver Well-Being (TANDem-2) de Vries et al. 2026 Download » Article Validation of the self-report quantified Tuberous Sclerosis Complex-Associated Neuropsychiatric Disorders Checklist (TAND-SQ) Chambers et al. 2025 Download » Article International
- [Checklists](https://tandconsortium.org/checklists/) - TAND Checklists Home » Resources » TAND Consensus Recommendations About the TAND-L and TAND-SQ Checklists There are now two TAND Checklists that may be downloaded free of charge for clinical use. The TAND-Lifetime (TAND-L) Checklist is designed for clinicians to use in a clinical interview to get an idea of the lifetime presence of TAND
- [Projects](https://tandconsortium.org/projects/) - Projects Home » Resources » TAND Consensus Recommendations Overview The TAND consortium have completed work on the TANDem-1 project and are currently working on TANDem-2. We will be actively recruiting participants for the TANDem-2 research study starting 28 February 2026. TANDem-2: Closing the gap to interventions for TAND Through our work in the TANDem-1 project,
- [TANDem-2](https://tandconsortium.org/tandem-2/) - TANDem-2: Closing the gap to interventions for TAND Home » Resources » TAND Consensus Recommendations Overview Welcome to the TANDem-2 project page! Here you will find an introduction to the aims of the project, including an overview of our methods. Background Many critical knowledge gaps remain in TAND research: we lack large-scale longitudinal data on
- [TANDem-1](https://tandconsortium.org/tandem-1/) - TANDem-1: Empowering families through technology Home » Resources » TAND Consensus Recommendations Overview The TANDem-1 project was an international multidisciplinary mobile-health project to empower families and individuals who live with TSC around the world. This project was a direct result of the feedback from our TSC stakeholders, and had three aims: Aim 1: Development and
- [NEWS](https://tandconsortium.org/news/) - All Our News Dutch translation of the family-focused introduction to the TAND consensus recommendations is now available! We are please to announce that the family-focused introduction to the TAND consensus recommendations is now available in Dutch. 17 June 2026 TAND consortium member Robert Waltereit promotes TSC and TAND in Würzburg! Thank you to Dr Robert
- [Team](https://tandconsortium.org/team/) - The TAND consortium team members Agnies Van Eeghen (2019-present) Read More » Anna Byars (2019-present) Read More » Anna Jansen (2019-present) Read More » Aubrey Kumm (2019-2024) Read More » Carla Fladrowski (2024-present) Read More » Chris Kingswood (2019-present) Read More » Darcy Krueger (2019-present) Read More » Dena Hook (2019-2020) Read More » Erin
- [CONTACT](https://tandconsortium.org/contact/) - Become a friend of the TAND consortium Like what we do? We’d love to keep you updated on our work. Sign up to receive updates. We hate SPAM too, so we’ll keep it minimal and concise. Subscribe to our newsletter SIGN UP By entering your email, you agree to our Terms & Conditions and our
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- [Terms](https://tandconsortium.org/terms/) - General Welcome to the TANDem website. If you continue to browse and use this website, you are agreeing to comply with and be bound by the following terms and conditions of use, which together with our privacy policy govern The TAND Consortium’s relationship with you in relation to this website. If you disagree with any
- [TIPS](https://tandconsortium.org/tips/) - TAND Tips from Families One of the key goals of the TANDem project is to develop a ‘TAND Toolkit’ of tips, suggestions and advice to families and individuals who live with TSC. Below we list a few examples we received from families all over the world. Please help us by sending us your tips of
- [ALL PRESENTATIONS](https://tandconsortium.org/all-presentations/) - All Presentations TAND Mini-Symposium 2026 The programme for the 2026 Mini-Symposium covered a range of topics including: TAND mechanisms, TAND measurement and ethical challenges in TSC care; the impact of TAND on family life and caregiver experiences, including sleep management difficulties, psychosocial aspects in Brazil, and the TSC and TAND landscape in India; and, potential
- [Typography](https://tandconsortium.org/about-us/) - Meet The Team Meet The Team Meet The Team Meet The Team Meet The Team Meet The Team Meet The Team Welcome to the website of the TANDem project. TANDem is an international multi-disciplinary mobile-health project to empower families and individuals who live with Tuberous Slerosis Complex (TSC) around the world. Meet The Team Welcome
- [Events Gallery](https://tandconsortium.org/events-gallery/) - A Seminar on Web Development Work Shop on React Native Golden Anniversary of QVT
- [All Tips](https://tandconsortium.org/all-tips/) - All Tips Extended deadline: Abstract submission open until 20 April for the TAND Mini-Symposium on 7 May 2026 The TAND consortium is pleased to invite abstract submissions for the third online TAND Mini-Symposium, to be held online on 7 May 2026 from 14:00 to 17:00 CET. Abstract submission opens on 9 March 2026 and closes
- [Meetings Gallery](https://tandconsortium.org/meetings-gallery/) - Meetings A Seminar on Web Development Work Shop on React Native Golden Anniversary of QVT
- [TANDem Launch Meeting](https://tandconsortium.org/tandem-launch-meeting/)
- [04B- Person](https://tandconsortium.org/04b-person/) - Pediatric Neurologist, MD Dr Jamie Capal University of North Carolina at Chapel Hill, USA Linkedin Twitter Youtube Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo.Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo.Lorem ipsum dolor sit
- [04A-PERSON _ PI-CO-PI](https://tandconsortium.org/04a-person-_-pi-co-pi/) - Child & Adolescent Psychiatrist, MBChB, FRCPsych, PhD Prof. Petrus de Vries Principal Investigator Division of Child & Adolescent Psychiatry,University of Cape Town, South Africa Linkedin Researchgate Youtube Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo.Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus,
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- [Content with side box](https://tandconsortium.org/?elementor_library=content-with-side-box) - Tuberous Sclerosis Complex, abbreviated to ‘TSC’, is a rare genetic disorder. It is caused by mutations in the genes TSC1 or TSC2 that produces the proteins hamartin and tuberin respectively. TSC affects approximately 1 in 6000 individuals involving all racial and ethnic groups. That means that there are about 1-2 million people around the globe
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- [Archive Page](https://tandconsortium.org/?elementor_library=archive-page) - Dutch translation of the family-focused introduction to the TAND consensus recommendations is now available! We are please to announce that the family-focused introduction to the TAND consensus recommendations is now available in Dutch. Read More » 17 June 2026 TAND consortium member Robert Waltereit promotes TSC and TAND in Würzburg! Thank you to Dr Robert
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