Non-Insured Health Benefits for First Nations and Inuit treatments

ROCHE: Evrysdi – Risdiplam

Available:

BIOGEN: Nusinersen – Spinraza

Available:

Initiation Criteria
1. Pre-symptomatic patients with two or three copies of the SMN2 gene, OR

2. Had the disease for <6 months, two copies of SMN2, and symptom onset after the first week after birth and on, or before seven months of age; OR

3. Patients under the age of 18 with symptom onset > 6 months of age, and never achieved the ability to walk independently.†

Stopping Criteria
1. For those pre-symptomatic at initiation: no improvement on HINE-2, CHOP INTEND, or HFMSE, OR

2. For those symptomatic at initiation: no improvement in HINE-2, CHOP INTENT, or HFMSE, OR

3. Permanent invasive ventilation required

NOVARTIS: Onasemnogene abeparvovec – Zolgensma

Available

Drug Exception Center

LATEST NEWS

Cure SMA Canada Conference August 19 – 21, 20220 Montreal, Quebec Le Centre Sheraton Montréal 1201 Blvd Rene-Levesque West

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COVID has proven we can quickly set up infrastructure without long-term clinical data. It’s time to do the same with rare diseases, says Durhane Wong-Rieger, president and CEO of Canadian Organization for Rare Disorders. Vanessa Hrvatin, Feb 28 2022 Sasha Kirkland, pictured with her husband, Mark and son Maks, lives with spinal muscular atrophy (SMA).…

Novartis Community Update

CURE SMA CANADA

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TOLL FREE 855.824.1277

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QUESTIONS

Please email Susi Vander Wyk at head office

CURESMA@TELUS.NET

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