Announcements

 
 
of 10 (total 94 items)
Updated MPS IV Family Resource Binder
Author : Kim Angel Publish Date : 9/6/2016

Click here to open the updated MPS IV Family Resource Binder

e-Connection August 2016
Author : Kim Angel Publish Date : 9/6/2016

Click here to link to the August 2016 e-Connection

Happy MPS Awareness Day! Create a custom "I love someone with MPS" photo for MPS Awareness Day!
Author : Kirsten Harkins Publish Date : 5/15/2014

Thinking of you on International MPS Day! This day began as a way to honour everyone in the MPS Community, to recognize, remember and rejoice in each other.    On International MPS Day we: Remember all the children and adults who suffer from MPS diseases. Think about the children we ...

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The Canadian MPS Society is seeking to fill the position of executive director
Publish Date : 5/13/2014

Our Organization:  Founded in 1984, The Canadian Society for Mucopolysaccharide and Related Diseases Inc. (The Canadian MPS Society) is celebrating its 30th anniversary.  For the past three decades, the Society has been committed to providing support to individuals and families affected wi...

2014 Summer Studentship Research Grants Funded
Author : Kirsten Harkins Publish Date : 5/8/2014

The Society is pleased to announce it is funding two Summer Studentship Research Grants in 2014, each valued at $4,000. Please click here for more information.

Rare Disease Day Message from the Canadian MPS Society
-- Together for better care

Author : Kirsten Harkins Publish Date : 2/28/2014

Seven years ago, the first Rare Disease Day was held in order to celebrate those living with all kinds of rare diseases, in all corners of the world. Today, we commemorate this special day by "joining together for better care" - clearly, the many challenges faced by those living with rare diseases c...

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Rare Disease Day Message from the Canadian MPS Society
-- Together for better care

Author : Kirsten Harkins Publish Date : 2/28/2014

Seven years ago, the first Rare Disease Day was created in order to celebrate those living bravely with rare diseases and shed light on the many challenges they face on a daily basis. It's clear that those challenges can only be overcome by working together as a global community toward increased edu...

BioMarin Announces FDA Approval for VIMIZIM(TM) (elosulfase alfa) for the Treatment of Patients With Morquio A Syndrome
-- VIMIZIM is the First and Only Specific Treatment for Patients With This Ultra-Rare Genetic Condition

Author : BioMarin Pharmaceutical Inc. Publish Date : 2/14/2014

SAN RAFAEL, Calif., Feb. 14, 2014 (GLOBE NEWSWIRE) -- BioMarin Pharmaceutical Inc. (Nasdaq:BMRN) today announced that the U.S. Food and Drug Administration (FDA) has approved VIMIZIM™ (elosulfase alfa) for patients with Mucopolysaccharidosis type IVA (MPS IVA; Morquio A syndrome). "The FDA app...

Rare Disease Study: Experiences and Preferences of Parents of Children with Rare Diseases
Author : Kirsten Harkins Publish Date : 2/3/2014

Are you the parent of a child with a rare disease living in Calgary, Edmonton or Ottawa? You are invited to share your experiences iwth the health care system as well as your preferences regarding genetic testing. Please call Kathleen Charlebois at 1-855-398-6724 or email her at kathleen.charlebois2...

A statement on compassionate use of unapproved therapies
Author : Kirsten Harkins Publish Date : 12/21/2013

The Canadian MPS Society has been contacted by several of our members concerning compassionate use of unapproved therapies for MPS conditions. In response, we would like to share the following thoughts. The Canadian MPS Society is pleased that there are FDA/Health Canada approved therapies for three...

of 10 (total 94 items)