Event Detail

What is tuberous sclerosis (TSC)?
At this moment, there are about 200 tuberous sclerosis patients with tuberous sclerosis (TSC) in Hong Kong. Tuberous sclerosis is a rare congenital genetic variation disease in which the brain, heart, kidney, skin, various organs and nervous system are covered with tumors. There may also be symptoms such as epilepsy, developmental delay or sebaceous adenoma on the face. Some patients' tumors are in the brain, affecting brain development, leading to mental retardation and autism.

What are the difficulties faced by patients with tuberous sclerosis (TSC)?
Nowadays, Europe, the United States, Taiwan, Singapore, Australia, etc. have begun to use the targeted drug "everolimus" to treat TSC patients and inhibit tumor growth. However, the Hospital Authority still lists the drug as a treatment for astrocytoma and it is a self-funded project, with cost up to 20,000 Hong Kong dollars per month that a group of patients do not have money for treatment.

IN128 selects TSC patients as service target, in addition to giving support and care to patients and their families, and at the same time, it wants to attract more people in the society to pay attention to this rare disease. Through social repercussions, it will attract the government attention and provide more resources to support needs of patients, so that they can be more positive and powerful on the road to rehabilitation.

On the day of the event, they will invite media and celebrities to support them. They will also film the whole process and interview of the patients, and then distribute them to social media in order to influence more people to pay attention to TSC, bringing more resounding and attention in the long run.

We sincerely invite everyone to support us.

"Travel together facing love”

Event Date: 28/1/2018 (Sunday)
Activity Time: 10:00-16:00
Venue: Tai Kong Po Farm
Clients: 89 patients with tuberous sclerosis, rare patients and their families
Beneficiary institutions: Tuberous Sclerosis Complex Association of Hong Kong and Invision Charity Foundation Limited
Contact person: Mei 97771149 / Xion 63462661 / Ko 67539293