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David Bentley

Chief Scientist at Illumina

Karen Harrison

Support Services Manager at Alex TLC

Dr Shirlene Badger

Patient Advocacy Lead, Illumina

Gisela Linthorst

Head of Patient advocacy and Patient Engagement at Azafaros

Diana Pangonis

Director of Family Services at NTSAD

Tim Ringrose

CEO at Cognitant

Lysel Brignoli

Global Director of Innovation RWE at Cerner Enviza

Gulcin Gumus

Research & Policy Project Manager at EURORIDS

Folker Quack

Founder of Hand in Hand

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

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

The GM2 Disease Registry

Information about the GM2 Disease Registry


An introduction to Cognitant: personalising health information

The CATS Foundation

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


Supporting families in Spain

Hand in Hand

Hand in Hand gegen Tay-Sachs und Sandhoff


Vaincre les Maladies Lysosomales


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