Join the Simon Ibell Petition for Hunter Syndrome (MPS II) Treatment
Information
Category:
Common Interest - Health & Wellness
Description:
The Government of Ontario is denying funding of an approved treatment for
people with Hunter Syndrome (MPS II).

Please join the NBA's Steve Nash in signing this petition to encourage the
Ontario Government to provide care to Simon Ibell and other MPS II patients.
Simon suffers from this rare genetic disorder that affects the entire body,
major organs and joints.

Enzyme Replacement Therapy for Hunter Syndrome is funded in BC and Alberta.
The Ontario drug plan, however, does not cover the cost... (read more)
Privacy Type:
Open: All content is public.

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Join the Simon Ibell Petition for Hunter Syndrome (MPS II) Treatment

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Name:
Join the Simon Ibell Petition for Hunter Syndrome (MPS II) Treatment
Category:
Common Interest - Health & Wellness
Description:
The Government of Ontario is denying funding of an approved treatment for
people with Hunter Syndrome (MPS II).

Please join the NBA's Steve Nash in signing this petition to encourage the
Ontario Government to provide care to Simon Ibell and other MPS II patients.
Simon suffers from this rare genetic disorder that affects the entire body,
major organs and joints.

Enzyme Replacement Therapy for Hunter Syndrome is funded in BC and Alberta.
The Ontario drug plan, however, does not cover the cost... (read more)
Privacy Type:
Open: All content is public.

Recent News
 

News:
DO NOT FORGET TO SIGN THE ONLINE PETITION!!!:
http://www.ipetitions.com/petition/treat_hunter_syndrome/

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Hunter Syndrome (MPS II) treatment will now be funded by the Ontario Government!!!:

Hi Everyone,

Thanks to you we have been successful in our fight.

Last night, I received a letter from the Ontario Ministry of Health stating that funding for Hunter Syndrome (MPS II) Enzyme Replacement Therapy Drug, Elaprase, will now be provided by the Ontario government. Unbelievable!!!

Elaprase will now be available on an Individual Clinician Review (ICR) basis meaning those patients who are eligible candidates in Ontario after a physician evaluation will now receive the treatment.

This result will prolong the life of six Ontario Hunter Syndrome patients (including myself). Last night, I talked to a Windsor, ON family, who are ecstatic, overwhelmed that their son, Syzmon, will finally receive the treatment.

I am still in shock and find it hard to believe that the long uphill battle is over.

The You Tube video, Globe & Mail article, the Canada AM appearance, funding petition, and Facebook Group all combined to put a lot of pressure on the ON gov't to make this important funding decision. I have been told that as a result of our efforts that Hunter Syndrome will now be a model for how rare disorders are approached in Ontario and across Canada.

Thank you for all your incredible support.

Have a great long weekend.

All the best.

Simon

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