Tuberous Sclerosis Complex Ireland
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Mission Statement
Our mission is to empower and support individuals and families affected by Tuberous Sclerosis Complex in Ireland. We aim to raise awareness about TSC, advocate for our members’ needs, and foster a supportive community. Through good governance and member engagement, we are dedicated to driving positive change.
About This Cause
Tuberous Sclerosis Complex Ireland is a volunteer run charity founded by parents of children with Tuberous Sclerosis Complex (TSC). TSC is a rare genetic condition which causes non-cancerous (benign) tumours to grow in many organ systems including the brain, kidneys, heart, lungs and skin. The severity of TSC can range from mild to severe, even within the same family. There are treatments and individuals need ongoing surveillance and management by a team of medical experts. It is estimated that TSC affects 1 in 6,000 live births, approximately 700 people in Ireland. Individuals of all ages may receive the diagnosis of TSC but it is usually diagnosed in childhood. Highlights of our work to date have been hosting our annual family fun days; delivering an annual conference featuring leading national and international experts in TSC and providing support and advice via our email/Facebook page/ WhatsApp group to members and families across Ireland. Other things we are working on: Increasing our visibility to health professionals working with people with TSC. Increasing awareness of TSC so that we can provide support and information to families of those newly diagnosed with the condition in what can be a very overwhelming time Providing improved information and education through webinars, our website and social media Providing more frequent in- person events to help further build our community. Advocating for improved access to appropriate medicines and more integrated health care services such as a specialist TSC clinic.