A new social media initiative aims to unite individuals, families, and caregivers affected by Tuberous Sclerosis Complex (TSC) from across the globe, ensuring that no one facing the rare condition feels isolated. The campaign, titled "TSC and Me," is designed to foster a deeply connected community by celebrating individual stories and highlighting the resilience, strength, and diversity of those living with the diagnosis.
Scheduled to run from January 15 to February 4, the campaign provides a digital platform for participants to share their lived experiences. The initiative culminates in a special celebration planned for Rare Disease Day 2026, marking a significant moment of visibility and recognition for the rare disease community.
What is TSC and Me?
At its core, the TSC and Me campaign is a social media movement that invites individuals and families affected by Tuberous Sclerosis Complex to step forward and share their personal journeys. Participants are encouraged to post a photograph accompanied by their personal story using the dedicated hashtag #TSCandMe across various social media platforms. By pooling these narratives together, the initiative seeks to construct a powerful online mosaic that reflects the multifaceted reality of life with TSC.
Tuberous Sclerosis Complex is a rare genetic condition that can cause non-cancerous tumors to grow in the brain and other vital organs such as the kidneys, heart, eyes, lungs, and skin. Because it is classified as a rare condition, many individuals and families affected by the diagnosis often experience a profound sense of isolation, struggling to find peers who truly understand the daily realities of managing the condition. The TSC and Me campaign addresses this isolation head-on by creating an accessible, digital space where community members can see reflections of their own experiences in the stories of others.
Why Does It Matter?
The implications of visibility for a rare condition like Tuberous Sclerosis Complex extend far beyond personal connection. Raising public awareness plays a critical role in shifting societal understanding, while policy-level awareness can directly influence the allocation of resources for medical research. Increased visibility helps drive research funding, which is essential for discovering better, more targeted treatments and, ultimately, working toward a potential cure.
Furthermore, the campaign underscores the human element behind medical terminology and clinical diagnoses. Behind every statistical figure and medical chart is a person, a family, and a unique story that deserves to be heard. By participating, individuals help make the invisible visible, transforming personal struggles into a collective force for change and advocacy.
How Can You Take Part?
Taking part in the campaign has been designed to be straightforward and accessible for anyone wishing to show support or share their connection to the condition. Individuals living with TSC, family members, dedicated caregivers, and supporters alike are invited to join the movement by sharing their photographs and personal narratives online. By including the specific hashtag #TSCandMe in their social media posts, participants automatically contribute their voices to the broader conversation taking place throughout the campaign window.
What Happens Next?
To preserve the legacy of the campaign and provide a permanent home for the community’s narratives, all participating posts will be featured on the official TSC and Me Wall. This digital gallery will serve as a visual showcase, displaying the diverse faces and powerful stories of the community members who chose to share their journeys. The wall will be hosted directly on the Tuberous Sclerosis Association (TSA) website, creating a lasting tribute that honors everyone who took part and ensures that these stories continue to inspire and educate visitors long after the initial campaign concludes.
When is it Happening?
The campaign officially launches on January 15 and runs continuously through February 4. This multi-week window provides ample opportunity for community members worldwide to share their contributions, read the stories of others, and engage with the digital content. The momentum built during these weeks will then be channeled into a special celebration planned for Rare Disease Day 2026, bringing the community together to reflect on the impact of their shared visibility and to continue advocating for a future with better treatments and improved support systems for all those affected by Tuberous Sclerosis Complex.
