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TSC Global Awareness Day

A small patch on the skin. A seizure out of nowhere.

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Leverage TSC Global Awareness Day to build brand trust through cause-driven storytelling and community engagement, positioning your organization as a champion for rare disease awareness and patient support.

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Share patient/family stories with #TSCGlobalDay to humanize the rare disease experience and drive emotional connection
Host or sponsor a blue-themed fundraising walk/run to generate donations while building community visibility
Create educational content (infographics, explainers) about TSC symptoms and early diagnosis to position your brand as a trusted health resource
Partner with TSC organizations for co-branded awareness campaigns targeting parents and healthcare professionals

History

TSC Global Awareness Day started in 2013. A group called Tuberous Sclerosis Complex International (TSCi) created that day.

They connected with organizations across many countries to form a united effort. Their goal was clear—help more people learn about TSC, a rare genetic disorder that causes tumors in different parts of the body.

Before this day existed, TSC remained mostly unknown to the public. Families affected by it often felt isolated.

Doctors sometimes struggled to diagnose it early. TSCi wanted to change that. They believed that sharing personal stories could open eyes and build understanding. So they picked one day each year to raise awareness around the world.

Since its beginning, the event has gained momentum. People now take part in over 50 countries. Supporters wear blue, share facts online, and take part in local events.

Clinics and hospitals use the day to talk about early signs and new treatments. Families post photos, tell their stories, and remind others they aren’t alone.

What began as a small campaign now brings people together across borders. TSC Global Awareness Day continues to grow each year, creating space for connection, learning, and hope.

The message is simple: TSC may be rare, but those affected deserve to be seen and heard.

How to celebrate

Wear Blue to Show Support

Choose blue clothing or accessories to express solidarity with the TSC community. This simple gesture can spark conversations and increase awareness about the condition.

Share Personal Stories Online

Use social media platforms to share experiences or information about TSC. Posting with hashtags like #TSCGlobalDay can help spread the word and connect with others.

Participate in Fundraising Events

Join local or virtual events such as walks, runs, or bike rides organized to raise funds for TSC research and support services. These activities not only generate resources but also foster community spirit.

Educate Your Community

Organize informational sessions at schools, workplaces, or community centers to educate others about TSC. Providing accurate information can dispel myths and promote understanding.

Support TSC Organizations

Consider donating to organizations dedicated to TSC research and support. Financial contributions can aid in developing treatments and providing resources for those affected.

FAQ

What is Tuberous Sclerosis Complex and how does it typically affect the body over time?

Tuberous Sclerosis Complex (TSC) is a genetic disorder that causes noncancerous tumors, or growths, to form in many parts of the body, most often the brain, kidneys, heart, skin, eyes, and lungs. Symptoms vary widely, from mild skin changes to seizures, developmental delays, and organ complications. Many people are diagnosed in childhood, but some are not recognized until adulthood. Because tumors and related issues can change over time, lifelong follow up with specialists is usually recommended to monitor brain activity, kidney size and function, lung health, heart rhythm, and skin lesions.

How is Tuberous Sclerosis Complex inherited, and can it appear in a family with no history of the condition?

TSC is usually caused by a mutation in either the TSC1 or TSC2 gene, which normally helps control cell growth. The condition follows an autosomal dominant pattern, which means a person only needs one altered copy of the gene to have TSC. Around one third of people inherit the mutation from a parent who has TSC, while about two thirds have a new (de novo) mutation with no prior family history. Because the mutation can be passed to children, families often meet with a genetic counselor to discuss genetic testing, recurrence risks, and reproductive options.

What are some early signs of Tuberous Sclerosis Complex that parents or caregivers might notice?

Early signs of TSC can appear before or soon after birth and often involve the skin, brain, or heart. Babies may have pale patches on the skin called hypomelanotic macules, facial angiofibromas that develop later in childhood, or small growths under or around the nails. Some infants develop heart tumors called cardiac rhabdomyomas that can be seen on prenatal ultrasound. Seizures, including infantile spasms, developmental delays, or difficulty meeting milestones can also be early clues. Because these signs can be subtle on their own, doctors often use a combination of physical examination, brain imaging, heart tests, and genetic testing to confirm a diagnosis.

How is Tuberous Sclerosis Complex usually managed and treated?

There is no cure for TSC, but many of its complications can be managed with a combination of medicines, procedures, and regular monitoring. Seizures are often treated with anti-seizure medications and, in some cases, specialized diets or surgery. Drugs that inhibit the mTOR pathway, such as everolimus, can shrink certain TSC-related tumors in the brain and kidneys and may help control seizures in some individuals. Other treatments can include laser or topical therapies for skin lesions, procedures to treat kidney tumors at risk of bleeding, and supportive services such as physical, occupational, or speech therapy. Care is typically coordinated through a multidisciplinary team that may include neurology, nephrology, dermatology, cardiology, pulmonology, and behavioral specialists.

In what ways can Tuberous Sclerosis Complex affect learning, behavior, and mental health?

Many people with TSC experience neurodevelopmental or behavioral challenges, although the type and severity differ widely. These can include intellectual disability, autism spectrum disorder, attention deficit hyperactivity disorder (ADHD), anxiety, depression, and difficulties with social communication or executive functioning. Seizures, sleep problems, and pain can make these issues worse. Early developmental screenings, behavioral assessments, and access to special education services or therapies can improve long term outcomes. Mental health support for both the individual and family is also considered an important part of comprehensive TSC care.

How common is Tuberous Sclerosis Complex, and why is it often underdiagnosed or misdiagnosed?

TSC is considered a rare disorder, with estimates suggesting it affects roughly 1 in 6,000 to 1 in 10,000 people worldwide. Underdiagnosis can occur because symptoms can be mild, appear at different ages, or resemble more common conditions. For example, seizures may be labeled as generalized epilepsy, or skin changes might be mistaken for ordinary birthmarks or acne. Some adults learn they have TSC only after a child is diagnosed or when they are evaluated for kidney, lung, or heart findings. Greater awareness among healthcare providers and the use of standardized diagnostic criteria and genetic testing have improved recognition, but delayed diagnosis is still common.

What kind of long term monitoring is recommended for someone living with Tuberous Sclerosis Complex?

People with TSC are usually advised to follow a structured surveillance plan throughout life, because tumors or related complications can appear or change over time. International guidelines recommend periodic brain MRI scans to check for growths, kidney imaging and blood tests to monitor kidney size and function, regular blood pressure checks, lung function tests and imaging in adolescents and adults, and echocardiograms or ECGs in children with heart involvement. Skin and eye exams, dental checks, and ongoing evaluations of learning, behavior, and mental health are also part of routine care. The exact schedule is tailored to the person’s age, sex, and specific organ involvement.