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:
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 for children and families battling with Galactosialidosis
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 expert with experience of cutting edge gene therapies. Working with UMass Chan Medical team to apply AAV gene therapy for the treatment of Galactosialidosis
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
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 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 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.
Associate Director, Clinical Translation. She is currently leading AAV Gene Therapy as a treatment for Galactosialidosis at UMass Chan Medical School.
Associate Director, Clinical Translation. She is currently leading AAV Gene Therapy as a treatment for Galactosialidosis at UMass Chan Medical School.
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.
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.
Jill is working on treatment of Sialidosis, very relevant to galactosialidosis.
Morningside Graduate School of Biomedical Sciences Neuroscience Program UMass Chan Medical School
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.
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.
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.
CEO & Principal Investigator at SphinCS GmbH. Working on various storage disorders to find effective treatment.
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.
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.
Medical Director (Clinic for Lysosomal Storage Disorders) and specialist Neuropediatrics and Metabolic Medicine.
First to initiate BMT on an early infantile form of Galactosialidosis.
Medical Director (Clinic for Lysosomal Storage Disorders) and specialist Neuropediatrics and Metabolic Medicine.
First to initiate BMT on an early infantile form of Galactosialidosis.
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.
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.
Medical Doctor. Investigated the Galactosialidosis patients in Turkey.
Pediatric Neurologist with two Galactosialidosis patients.
Clinician with a Galactosialidosis patient.
Clinician with a Galactosialidosis patient.
The first doctor to carry out Cord Blood Transplant on Galactosialidosis patient.
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.
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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