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Alex Merckx

Director of Marketing and Partnerships at Cognitant

Professor Timothy Cox

Professor of Medicine (Emeritus) and Honorary Consultant Physician at The University of Cambridge

Taylor Fields

Chief Product Development Officer at IntraBio

Gisela Linthorst

Head of Patient advocacy and Patient Engagement at Azafaros

Diana Pangonis

Director of Family Services at NTSAD

Emma Murphy

Family Support Officer at The CATS Foundation

Beatriz Fernández Domínguez

Fundadora y Directora General at ACTAYS

Dan Lewi

Chairman of the ETSCC and CEO of The CATS Foundation

Patricia Durao

Executive Director of The CATS Foundation

Mario Cordero


Toni Mathieson


Isabela Batsu

Global Project Head, Clinical Development, Rare Diseases at Sanofi

Rebecca Stewart

Co-founder of Rare Revolution

Kevin Romer

President and Co-Founder Mathew Forbes Romer Foundation

Cecile Paquet Luzy

Head of Clinical Science at Azafaros

Maria Cavaller

Patient Engagement at EURORDIS

Mathias Schmidt

President & CEO of JCR USA, Inc.

Riliang Zheng

Clinical Research Director at Sanofi

Michael Kiefer

Doctoral Research Fellow at MGH Institute of Health Professions

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The CATS Foundation

The Cure & Action for Tay-Sachs (CATS) Foundation is the leading UK based charity providing support to families affected by Tay-Sachs and Sandhoff disease.



The European Charity Consortium for Tay-Sachs and Sandhoff


Divulgar e Orientar para Combater e Enfrentar a Tay Sachs, Sandhoff e GM1


Vaincre les Maladies Lysosomales

Hand in Hand

Hand in Hand gegen Tay-Sachs und Sandhoff


Supporting families in Spain

The CATS Foundation

The Cure & Action for Tay-Sachs (CATS) Foundation

RARE Revoluion

RARE Revolution Magazine; to bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. – It’s time to turn the tide.