Welcome to the Garrod Association

Contact Us: Please email GarrodAssociation@outlook.com with your questions or comments so they may be directed to the appropriate person.  Thank you.

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More Information coming soon…..

When
May 7-9, 2020

Where
Delta Hotels by Marriott London Armouries
325 Dundas St, London, ON N6B 1T9
Canada

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An International Registry for Morquio-B Disease hosted at BC Children’s Hospital

Morquio-B-Disease is an ultra-rare form of late-onset GM1-Gangliosidosis, characterized by bone disease resembling Morquio-A Disease.

Various research consortia are currently developing treatments for this condition.

Funding from the Priest Family Foundation (www.morquiob.com) allows us to collect natural history data, which will be most essential for the future design of clinical trials.

If you have patients with Morquio-B-Disease or with late-onset GM1-Gangliosidosis, please contact us.

Every single patient is important.

Sylvia Stockler (PI) sstockler@cw.bc.ca

Maria Boldut (Project Manager) maria.boldut@cw.bc.ca

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Rare Diseases: Models & Mechanisms Network

Have you identified a new genetic disease or work on a genetic disease which would merit further research in a model organism? If so, please consult https://rare-diseases-catalyst-network.ca for funding and collaboration opportunities. Letter of Information

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Seeking Farber Disease or SMA-PME Patients

Plexcera Therapeutics LLC, a biotech firm which is developing an enzyme replacement therapy for acid ceramidase deficiency, is seeking Farber Disease patients to be part of a clinical trial to commence tentatively in the second half of 2015.

Dr. Alexander Solyom, MD, working with Plexcera, is collecting natural history data on SMA-PME patients and coordinating an international natural history study of Farber Disease including non-transplanted, transplanted, and patients since deceased.

Please contact him for further information at patients@plexcera.com


Contact Us:
 Please email GarrodAssociation@outlook.com with your questions or comments so they may be directed to the appropriate person.  Thank you.