Asociatia Invingem Sindromul Bourneville

03/06/2026

03/06/2026

Esti Terapeut? Te invitam sa te alături echipei noastre! Este un rol pentru oameni aflați la început de drum, dar cu studii relevante, seriozitate și dorință reală de formare într-un domeniu în care impactul se construiește cu răbdare, rigoare și prezență.

Lucrăm cu copii cu TSA, ADHD, sindrom Down și alte particularități de dezvoltare.

Acceptăm candidați cu studii în terapie ocupațională, psihologie sau psihopedagogie specială, cu diplomă și drept de practică / statut profesional conform domeniului. Pot aplica și candidați cu formare în kinetoterapie, educație fizică și sport sau domenii conexe.

Oferim training specializat în integrare senzorială, formare în echipă multidisciplinară și oportunitatea de a învăța într-o clinică unde terapia este construită serios, aplicat și cu impact real asupra copilului.

Program: Full-time, 8 ore/zi + pauză de masă
Locație: București, sector 4
CV: [email protected]

Nu căutăm perfecțiune! Căutăm seriozitate, rezistență, vocație și disponibilitatea de a învăța corect o profesie care poate schimba vieți.

25/05/2026

This review aims to describe how TSC is diagnosed and managed, and focuses on early detection, careful monitoring, and coordinated multidisciplinary care. The authors also highlight newer treatment approaches, particularly therapies targeting the mTOR pathway, which can improve outcomes for some peo...

25/05/2026

⭐Day 22 of TSC Awareness Month! ⭐

If parents are unaffected, the chance of a sibling of someone diagnosed with TSC also having
TSC is 1-2%.

This month, we’re coming together with TSC International (TSCi) and TSC organizations around the world to raise awareness, support families and advocate for everyone impacted by TSC.

💬 Share your TSC story with us in the comments and join us in advocating and raising awareness all month long!

Tune in to the TSC Global Awareness Day page and learn more about TSC Global Awareness initiatives at https://hubs.li/Q04hz2ys0.

08/05/2026

Join us for Consensus Guidelines: What You Need to Know!

The second webinar in the 2026 TSC World Conference Series, will take place on Monday, May 11, 2026, at 1 pm ET. This webinar, moderated by Chris Kingswood, MD, featuring expert presenters Darcy Krueger MD, PhD and Hope Northrup, MD, will provide an overview of the latest Consensus Guidelines for the diagnosis, surveillance, and management of TSC. Developed by international experts and updated regularly, these guidelines offer critical, evidence-based recommendations to help individuals with TSC receive comprehensive and consistent care.

Register here: https://hubs.li/Q04fJR6T0

Participation is not limited to conference attendees. You are welcome to join the webinar even if you do not plan to attend the 2026 TSC World Conference. We encourage you to join any sessions that may be helpful for yourself or those you support.

08/05/2026

Genetic testing for epilepsy can feel overwhelming: for families and providers alike. Rare Epilepsy Network’s new digital resource breaks it down clearly, covering everything from available testing options to interpreting results, finding genetic counselors, and having informed conversations with your care team.

Worth bookmarking and sharing. Explore here: https://www.rareepilepsynetwork.org/genetictesting
Rare Epilepsy Network: REN

08/05/2026

29/04/2026

29/04/2026

What if TSC tumours are fuelled by something we don’t fully understand?

Current treatments, including medicines like Everolimus, can help control tumour growth. But they don’t work perfectly for everyone.

Emerging evidence suggests that inflammation may play a role in tumour growth. Thanks to the TSA’s new research strategy, which includes funding for four Seedcorn awards of up to £10,000 each, Professor Andrew Tee will be investigating whether anti-inflammatory medicines could offer a new way to treat tumours, potentially alongside existing treatments.

When it comes to TSC, we can’t afford to stop asking questions and looking for new answers.

Please help us fund research that challenges assumptions and brings hope of better treatment options. You can find more details and how to donate here or through the link in our Instagram bio: https://tuberous-sclerosis.org/get-involved/fundraise-for-us/tsa-fundraising-campaign/research-to-real-life/