About Us

A Few Words About Us

The Tay Sachs Association is a non-profit organization bringing together patients with this rare metabolic disease, their families, friends, partners, professionals, and everyone who wants to show their support. The association’s goal is to foster mutual cooperation and share the specific challenges and needs that commonly arise in the daily lives of those affected. We also aim to be a reliable source of all newly available information about this diagnosis from around the world. Additionally, we strive to actively explore all options for supportive treatments for this disease, making them accessible to all patients without distinction.

We founded the association at the beginning of 2025 as parents of a daughter who was diagnosed with the disease. We were inspired by other associations under the umbrella of ČAVO, and we are now also officially part of it.

Our primary mission is to raise public awareness about this issue, but we also plan to organize and actively participate in charitable events and fundraisers, with the goal of providing practical and targeted support to individual members of the association. We aim to engage with health insurance companies to gather information on all possible supportive activities and projects (such as assistive devices, rehabilitation, spa treatments, etc.) and share these experiences sensitively and responsibly with other members. Trust, mutual respect, consideration, and above all, responsibility are and will always be the guiding principles of our association.

Tay Sachs was established through official registration, fulfilling all legal requirements. The association’s rules are detailed in its Statutes, which are publicly available at www.taysachs.cz. We follow a strict ethical code, and personal data are processed in accordance with internal guidelines, applicable laws, and always with the member’s consent.

Who is a Rare Patient?

A rare disease is defined as a condition affecting fewer than 5 patients in 10,000. Worldwide, there are currently 6,000–8,000 known rare diseases, most of which are genetic. They are often incurable and life-threatening. Early diagnosis and proper care, however, can significantly improve both quality and length of life. This also means that answers to “common” questions are rarely available. One of our goals is to consolidate the knowledge we gain and make it accessible to other parents who may face a similar situation. In everyday life, it is easy to meet people with shared interests in culture, sports, or travel—but it is rare to encounter someone dealing with a rare disease.

We are deeply grateful to anyone willing to support our members, whether through financial contributions to a specific individual or a particular project. Every form of support is sincerely appreciated.