Reliable information
We want to be a reliable source of up-to-date information about this diagnosis from around the world, and we work to make supportive treatment available.
Patient association
A few words about us
Tay-Sachs SK is a non-profit association that brings together patients with this rare metabolic disease, their families, friends, professionals and everyone who would like to show their support.
Our association was founded by a family directly affected by the disease — so that patients with rare Tay-Sachs disease and their loved ones would not have to face their situation alone in Slovakia. Our aim is to strengthen cooperation and to address the specific challenges that affected families meet every day.
We operate as an officially registered association — we follow a code of ethics and handle data in accordance with the law and with the consent of our members.
Our statutes are publicly available on the Get involved page — you will also find the membership application form there.
Our values
- Trust
- Mutual respect
- Consideration
- Responsibility
These are, and always will be, the guiding principles of our association.
What we do
Our main goals
Events and fundraising
We raise public awareness of the disease and organise charity events and fundraising for the benefit of patients and their families.
Cooperation
We cooperate with doctors, researchers and organisations abroad so that experience and knowledge reach those who need them.
Who is a rare patient?
< 5
patients per 10,000 people
6 000 – 8 000
known rare diseases worldwide
A rare disease is defined as a condition affecting fewer than 5 patients in 10,000. The vast majority of these diseases are genetic in origin, are often incurable and life-threatening — yet early diagnosis and the right care can significantly improve both quality of life and life expectancy.
Our association gathers experience and knowledge in order to help parents facing a similar situation — because in everyday life we rarely meet anyone else living with a rare disease.
Thank you to all our supporters — whether you stand by us financially or in any other way.
