A new social media initiative aims to unite individuals, families, and caregivers affected by Tuberous Sclerosis Complex (TSC) from January 15 to February 4, culminating in a special celebration for Rare Disease Day 2026. The campaign, titled "TSC and Me," is designed to foster a sense of belonging, celebrate individual and collective resilience, and ensure that no one navigating the rare condition feels isolated.
By inviting participants to share their personal experiences online, the campaign seeks to build a powerful digital community that reflects the strength and diversity of those living with TSC. The initiative relies on digital storytelling to bridge geographical divides, allowing patients, families, and supporters to connect over shared experiences, daily triumphs, and the unique challenges posed by the condition.
Tuberous Sclerosis Complex is a rare genetic condition that can cause non-cancerous tumors to grow in various organs, including the brain, eyes, heart, kidneys, lungs, and skin. Because of its rarity and the wide spectrum of symptoms it presents—ranging from mild skin abnormalities to severe neurological complications—many individuals and families affected by the diagnosis often report feeling isolated from others who understand their reality.
Organizers emphasize that the "TSC and Me" campaign addresses this isolation directly by creating a visible, supportive network. Beyond emotional support, the initiative carries significant public awareness objectives. Greater visibility in the public sphere and among policymakers is widely recognized as a crucial driver for increased research funding, which in turn can lead to the development of better treatments and, ultimately, a potential cure for the condition.
Participation in the campaign is designed to be accessible to a wide audience. Individuals are encouraged to take part by capturing a photo and sharing their personal story on social media platforms using the official hashtag, #TSCandMe. Whether the poster is an individual living with a TSC diagnosis, a dedicated family member acting as a caregiver, or a community member wishing to demonstrate solidarity, every contribution is viewed as a vital piece of a larger narrative.
All submitted posts will be featured on the "TSC and Me Wall," a dedicated digital gallery hosted on the official Tuberous Sclerosis Association (TSA) website. This curated space will serve as a permanent digital tribute, showcasing the faces, voices, and lived experiences of the community members who took part in the initiative. By collecting these stories in one central location, the gallery aims to provide a lasting resource that highlights the human element behind the medical statistics.
The timing of the campaign spans several weeks in the winter, beginning on January 15 and concluding on February 4. This period leads directly into the broader global observance of Rare Disease Day 2026, aligning the community’s local efforts with an international movement that advocates for equity in healthcare, diagnosis, and research for millions of people worldwide who live with rare conditions.
Ultimately, supporters of the initiative stress that participating in "TSC and Me" is a powerful way to make the invisible visible. Behind every medical chart, clinical trial, and diagnosis is a real person, a dynamic family, and a unique story that deserves to be heard. Through this connected community effort, organizers hope to demonstrate that while TSC may be a rare disease, those who live with it are surrounded by a widespread and enduring network of support.
