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Bcureful travel & lodging assistance

The Bcureful Travel Fund® at the TSC Alliance underwrites the TSC Travel and Lodging Patient Assistance Program, which is administered by the National Organization for Rare Disorders (NORD). This travel

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Grief & Bereavement

All caregivers should prepare for the possibility of grief or bereavement during the care of a loved one. Caregivers naturally become deeply emotionally invested in the individuals for whom they

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Caregiver Mental Health

Being a caregiver can be equally rewarding and overwhelming at the same time – it is completely normal to feel this way. Many caregivers start this journey as parents, yet

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Estate & Financial Planning

What is estate and financial planning? This topic can seem overwhelming with the breadth of information available on the topic. This guide will help you get familiar with the process

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Working with Your Healthcare Team

You do not need to have all the answers or become an expert in TSC to navigate you/your loved one’s care. You can empower yourself by clearly advocating your understanding

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Starting a New Treatment Plan

Navigating a new treatment plan can elicit mixed emotions – on one hand, starting a new plan may seem daunting, while on the other, a change can provide hope and

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Spotlight on TSC Alliance

2024 marks the 50th anniversary of the TSC Alliance®! Throughout the year, we’ll celebrate five decades of progress as well as look forward with much promise for the future. Join

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Lungs

Lung involvement is more common in women with TSC than men. The average age of onset is during the childbearing years, although lung involvement can occasionally occur in teenagers with

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Surveillance & treatment

The following table provides guidelines to help you and your loved one manage the treatment of TSC. Additional information for your physician is available here. Surveillance & management recommendations for TSC

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Adult diagnosis

Receiving a diagnosis of a rare genetic disease as an adult can be confusing and overwhelming. Depending on the findings, it is important to have ongoing conversations with your healthcare