A European group fighting Tay-Sachs & Sandhoff

One goal. One group. One voice.

One goal

Members of the ETSCC want to find a treatment for Tay-Sachs & Sandhoff.

One group

Sharing information helps us achieve our aims in the fight against Tay-Sachs & Sandhoff.

One voice

A collective group has a stronger presence in making its voice heard.


Bringing European Tay-Sachs & Sandhoff charities together.

The ETSCC was created to enable European charities to come together in the fight against Tay-Sachs and Sandhoff. Members  are all recognised charities in their country of origin.

The three aims of the ETSCC are to raise awareness of Tay-Sachs and Sandhoff, support the research for a potential treatment and provide a united European voice.

The members of the ETSCC meet once a year to discuss the progress of the research into Tay-Sachs and Sandhoff and the consortiums strategy.


Raising awareness

Members of the ETSCC are all dedicated to raising awareness and creating a deeper understanding of Tay-Sachs and Sandhoff in the wider community.

Supporting research

The ETSCC makes an annual group donation to the research into a potential treatment for Tay-Sachs and Sandhoff which is funded by each charity’s yearly membership.

European group

As a collective the ETSCC allows for small Tay-Sachs and Sandhoff specific charities to have a large European group help them meet their own specific charitable objectives.

Meet the team

Daniel Lewi
Daniel Lewi
Beatriz Fernández
Beatriz Fernández
Katy Lewi
Katy Lewi
Consortium Secretary
Professor Timothy Cox
Professor Timothy Cox
Medical Advisor
Natalia Suárez Rueda
Natalia Suárez Rueda
Charity Representative
Patricia Durao Lewi
Patricia Durao Lewi
Charity Representative
Benoit Clermont
Benoit Clermont
Charity Representative
Folker Quack
Folker Quack
Charity Representative


We provide a single European voice for Tay-Sachs charities.

When you become a member, you will join the only European collective which is fighting Tay-Sachs.

Our aim is to help find a potential treatment for Tay-Sachs and its associated diseases. We are dedicated to reaching this goal by providing research funding.

By becoming a member of the ETSCC your charity will get the many benefits of joining a group who are all working towards the same goal. We will beat Tay-Sachs.

Membership benefits

Share your work with other Tay-Sachs charities.


Receive help in achieving your charity objectives.


Fund the research into Tay-Sachs directly.


Opportunity to take part in new research projects.


Direct contact with other Tay-Sachs charities.

Join us

Contact the ETSCC to enquire about becoming a member.


Charity members of the ETSCC

Click on the charity name for more information


Get in touch with us

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