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Michael Kiefer

Doctoral Research Fellow at MGH Institute of Health Professions

Riliang Zheng

Clinical Research Director at Sanofi

Mathias Schmidt

President & CEO of JCR USA, Inc.

Maria Cavaller

Patient Engagement at EURORDIS

Cecile Paquet Luzy

Head of Clinical Science at Azafaros

Kevin Romer

President and Co-Founder Mathew Forbes Romer Foundation

Rebecca Stewart

Co-founder of Rare Revolution

Isabela Batsu

Global Project Head, Clinical Development, Rare Diseases at Sanofi

Toni Mathieson


Mario Cordero


Patricia Durao

Executive Director of The CATS Foundation

Dan Lewi

Chairman of the ETSCC and CEO of The CATS Foundation

Beatriz Fernández Domínguez

Fundadora y Directora General at ACTAYS

Emma Murphy

Family Support Officer at The CATS Foundation

Diana Pangonis

Director of Family Services at NTSAD

Gisela Linthorst

Head of Patient advocacy and Patient Engagement at Azafaros

Taylor Fields

Chief Product Development Officer at IntraBio

Professor Timothy Cox

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

Alex Merckx

Director of Marketing and Partnerships at Cognitant

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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.