Contact Us

If you would like more info or would like to collaborate with us to help progress a treatment option, please contact us using the details below:

[email protected]

00447944513109

You can also join the ISMRD mailing list.

ISMRD stands for International Society for Mannosidosis & Related Diseases. It advocates internationally for patients with diseases like galactosialidosis. There is strong partnership between Galactosialidosis Network and ISMRD.

International Directory of Clinicians and Scientists with experience of galactosialidosis are cited here, if you are a patient, parent or professional with an interest in galactosialidosis you may want to get in touch.

Patient Advocate, Board Member of ISMRD
Galactosialidosis Network – London, UK
Cagdas Canbolat

Patient Advocate for children and families battling with Galactosialidosis

Metabolic Consultant
Great Ormond Street Hospital – London, UK
Dr Alex Broomfield

Metabolic expert with experience of cutting edge gene therapies.  Working with UMass Chan Medical team to apply AAV gene therapy for the treatment of Galactosialidosis

Metabolic Consultant
Great Ormond Street Hospital – London, UK
Dr Alex Broomfield

Metabolic expert with experience of cutting edge gene therapies.  Working with UMass Chan Medical team to apply AAV gene therapy for the treatment of Galactosialidosis

Genetics
St Jude Children’s Hospital – Memphis, USA
Dr Alessandra D’Azzo-Grosveld

The leading global expert in Galactosialidosis.

Produced numerous papers on Galactosialidosis.  

Working with UMass Chan Medical team to apply AAV gene therapy for the treatment of Galactosialidosis

Genetics
St Jude Children’s Hospital – Memphis, USA
Dr Alessandra D’Azzo-Grosveld

The leading global expert in Galactosialidosis.

Produced numerous papers on Galactosialidosis.  

Working with UMass Chan Medical team to apply AAV gene therapy for the treatment of Galactosialidosis

Clinical Geneticist
Bay State Health – USA
Dr Mary-Alice Abbott

Clinical geneticist treating people with inherited disorders or genetic abnormalities.

Also principal investigator working with UMass Chan Medical team to apply AAV gene therapy for the treatment of Galactosialidosis. 

Clinical Geneticist
Bay State Health – USA
Dr Mary-Alice Abbott

Clinical geneticist treating people with inherited disorders or genetic abnormalities.

Also principal investigator working with UMass Chan Medical team to apply AAV gene therapy for the treatment of Galactosialidosis. 

Clinical Translation
UMass Chan Medical School – Boston, USA
Dr Heather Gray Edwards

Associate Director, Clinical Translation. She is currently leading  AAV Gene Therapy as a treatment for Galactosialidosis at UMass Chan Medical School. 

Clinical Translation
UMass Chan Medical School – Boston, USA
Dr Heather Gray Edwards

Associate Director, Clinical Translation. She is currently leading  AAV Gene Therapy as a treatment for Galactosialidosis at UMass Chan Medical School. 

AAV Expert
UMass Chan Medical School – Boston, USA
Dr Miguel Sena Esteves

Associate Professor and member of the Horae Gene Therapy Centre. Leading on AAV Gene Therapy as a treatment for Galactosialidosis at UMass Chan Medical School.

AAV Expert
UMass Chan Medical School – Boston, USA
Dr Miguel Sena Esteves

Associate Professor and member of the Horae Gene Therapy Centre. Leading on AAV Gene Therapy as a treatment for Galactosialidosis at UMass Chan Medical School.

PhD Candidate Heather Gray-Edwards Lab
UMass Chan Medical School – Boston, USA
Jill Gallagher

Jill is working on treatment of Sialidosis, very relevant to galactosialidosis.

Morningside Graduate School of Biomedical Sciences Neuroscience Program UMass Chan Medical School

Department Chair at King Faisal Specialist Hospital and Research Centre – Riyadh, Saudi Arabia
Dr Moeen Alsayed

Dr Moeen has several patients with galactosialidosis and in support of finding an effective treatment. He is currently exploring the opportunity presented by gene therapy and how it can be taken forward.

Assistant Professor – inborn error of metabolism and clinical genetic
Salmaniya Medical Hospital, Kingdom of Bahrain
Dr Zahra Saeed Alsahlawi


Consultant pediatric / inborn error of metabolism and clinical geneticist. Clinician at Salmaniye Medical Hospital in Bahrain with 7 patients with Galactosialidosis. 

Supporting UMass Chan Medical School to apply AAV Gene Therapy as a treatment for Galactosialidosis. 

Assistant Professor – inborn error of metabolism and clinical genetic
Salmaniya Medical Hospital, Kingdom of Bahrain
Dr Zahra Saeed Alsahlawi


Consultant pediatric / inborn error of metabolism and clinical geneticist. Clinician at Salmaniye Medical Hospital in Bahrain with 7 patients with Galactosialidosis. 

Supporting UMass Chan Medical School to apply AAV Gene Therapy as a treatment for Galactosialidosis. 

LSD Expert
SphinCS GmbH – Hochheim, Germany
Dr Eugen Mengel

CEO & Principal Investigator at SphinCS GmbH. Working on various storage disorders to find effective treatment.

Hematology
Charité Universitätsmedizin – Berlin, Germany
Prof. Dr. Med. Johannes H. Schulte

Specialised physician for paediatric oncology and haematology at Berlin School of Medicine.  The first doctor to carry out Bone Marrow Transplant on an early infantile Gactosialidosis patient.

Hematology
Charité Universitätsmedizin – Berlin, Germany
Prof. Dr. Med. Johannes H. Schulte

Specialised physician for paediatric oncology and haematology at Berlin School of Medicine.  The first doctor to carry out Bone Marrow Transplant on an early infantile Gactosialidosis patient.

Pediatric Specialist, Pediatric Metabolic Medicine (PMM)
Center for Child & Adolescent Medicine, University Hospital Heidelberg – Heidelberg, Germany
Dr Ali Tunc Tuncel, M.D.

Medical Director (Clinic for Lysosomal Storage Disorders) and specialist  Neuropediatrics and Metabolic Medicine.

First to initiate BMT on an early infantile form of Galactosialidosis.

Pediatric Specialist, Pediatric Metabolic Medicine (PMM)
Center for Child & Adolescent Medicine, University Hospital Heidelberg – Heidelberg, Germany
Dr Ali Tunc Tuncel, M.D.

Medical Director (Clinic for Lysosomal Storage Disorders) and specialist  Neuropediatrics and Metabolic Medicine.

First to initiate BMT on an early infantile form of Galactosialidosis.

Gazi University – Ankara, Turkey
Dr Fatih Ezgü

Fatih Ezgü is a Professor of Pediatrics and Head of the Department of Pediatric Genetics at Gazi University, Faculty of Medicine, Department of Pediatrics, Ankara, Turkey.

Gazi University – Ankara, Turkey
Dr Fatih Ezgü

Fatih Ezgü is a Professor of Pediatrics and Head of the Department of Pediatric Genetics at Gazi University, Faculty of Medicine, Department of Pediatrics, Ankara, Turkey.

Department of Pediatrics, Division of Inherited Metabolic Disorders
Dokuz Eylul University – Izmir, Turkey
Dr Pelin Teke Kisa

Medical Doctor. Investigated the  Galactosialidosis patients in Turkey.

Rare Disease Cordinator
University of Barcelona – Barcelona, Spain
Dr Mireia del Toro

Pediatric Neurologist with two Galactosialidosis patients.

Senior Consultant, Paediatrics
Qatar, Doha
Dr Tawfeq Omran

Clinician with a  Galactosialidosis patient.

Senior Consultant, Paediatrics
Qatar, Doha
Dr Tawfeq Omran

Clinician with a  Galactosialidosis patient.

Pediatric Specialist
Shandong First Medical University – Shandong, China
Dr Wang Hongmei

The first doctor to carry out Cord Blood Transplant on Galactosialidosis patient.

Head, Rare Diseases, DASA-GENEONE
Porto Alegre, Rio Grande do Sul, Brazil
Dr Roberto Giugliani

Professor, Dep Genetics, UFRGS – Founder and Member, Med Genet Serv, HCPA – Co-President, House of Rares –  Member, Brazilian Academy of Sciences

Also produced papers on galactosialidosis patient in Brazil.

Head, Rare Diseases, DASA-GENEONE
Porto Alegre, Rio Grande do Sul, Brazil
Dr Roberto Giugliani

Professor, Dep Genetics, UFRGS – Founder and Member, Med Genet Serv, HCPA – Co-President, House of Rares –  Member, Brazilian Academy of Sciences

Also produced papers on galactosialidosis patient in Brazil.

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