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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.

Garrod symposium 2020 cancelled

Cancellation of The Garrod Symposium: Unique Populations, Unique IEMs
Event Dates: May 7 – 9, 2020
Location: London, ON
A message from The Garrod Association & UBC Interprofessional Continuing Education
After carefully considering the evolving situation with COVID-19, and keeping in mind the Public Health Agency of Canada’s advice on mass gatherings during the outbreak, we have made the difficult and unprecedented decision to cancel the The Garrod Symposium, scheduled for May 7 – 9, 2020.
We made this decision relying on the experts from the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). Additionally, in the past 48 hours, there have been rising concerns that even though Canada is still deemed “low risk”, travel to any large group gatherings is not advised from a public and personal health perspective (this is also what the CDC is urging). We believe cancellation is the only responsible course of action to protect the health and well-being of attendees.
This is the first time we had to cancel an initiative and share your disappointment; we are trying to reschedule the event to May 6-8, 2021 in London, ON (same venue: Delta Hotels by Marriott London Armouries). Please mark your calendar for this new date and we will provide you more up-to-date information in the next two weeks, including the possibility of a smaller virtual meeting for trainee abstract presentations for 2020.
We hope you can understand our decision and will look forward to seeing you next year.
What Does This Mean for You?
Registration Refunds and/or Credits
We will provide full refunds for all registrations and exhibits and sponsorships. Alternatively, you can apply the costs that you have incurred to the 2021 initiative. This is the preferred method but we understand if you wish a full refund at this point.
There is no need to contact the IPCE to initiate your reimbursement. We will contact you in the next few weeks to start this process. Please note that reimbursements will be done through your original method of payment. We will process refunds as quickly as possible, but please be patient as they may take a few weeks to complete.
Travel and Hotel Cancellations
Travel and hotel arrangements made for the event are your responsibility to cancel. We have seen that most airlines are giving full refunds during this time and that the hotel is fully refundable at this point.
Program Speakers
At present it seems that 2021 theme will remain same. We understand that the speakers may be different due to some conflicts with their schedule. We will be in touch fall of 2020 to re-confirm your speaking engagements.
Abstracts
At present the symposium is cancelled. There is a possibility of a virtual half-day Garrod research day, where these abstracts can be presented by Zoom. We will contact you individually in regards to this in the next week.
Sponsors and Exhibitors
We will contact you individually in regards to this in the next week.
Questions?
Please contact jo.ipce@ubc.ca if you have questions that are not addressed above. Thank you.