News

New Gene Therapy Study

The Phase I Gene Therapy Study for Fabry Disease is looking to recruit interested patients. This is a first-in-human study for the treatment of Fabry disease.

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Dr. West / Resverlogix and Apabetalone

In the 16-week clinical trials expected to start later this year — if the research method is given the nod by the QE II’s ethics committee — the researchers led by West and Khan will measure the effects of the drug apabetalone on 44 patients suffering with Fabry disease.

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Join the Board

The Board is responsible for the highest level of decision-making and communicates the organization’s vision to all members and the community.

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Event

WORLDSymposium Annual Scientific Meeting

The Annual WORLDSymposium is often cited as the most important scientific meeting on lysosomal molecular biology, disorders and treatment.

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CORD’s Annual Rare Disease Day Conference

The Canadian Organization for Rare Disorders (CORD) is hosting a Rare Disease Day 2017 conference taking place on March 30-31, 2017.

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Fabry International Network Expert Meeting

The fifth Fabry International Expert Meeting is taking place on May 19 & 20, 2017 at the Royal Olympic Hotel in Athens, Greece.

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Rare Disease Day 2017

Rare Disease Day takes place on the last day of February each year. Stay tuned for what YOU can do as a Canadian Fabry patient on this day.

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Protalix Biotherapeutics – BALANCE study

The BALANCE study is a clinical research study that will compare the safety and efficacy of an investigational medication ( a potential new medication) with an approved medication, agalsidase beta, also known as Fabrazyme.

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Replagal (agalsidase alfa) – Shire Canada

Replagal (agalsidase alfa) was approved by Health Canada in 2004 and indicated for long-term enzyme replacement therapy in patients with a confirmed diagnosis of Fabry disease.

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Migalastat – Amicus Therapeutics

Amicus Therapeutics is currently developing migalastat, an oral drug designed to bind to and stabilize the α‐Gal A that is made in the patient’s own cells, with the intention of enabling its trafficking to lysosomes.

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