Why is SMA so challenging?
Imagine a disease that destroys the motor neurons controlling the arms, legs, chest, face, throat and tongue. That’s SMA, or Spinal Muscular Atrophy. About 1 in 6000 newborns are affected, and about 1 in 40 people carry the gene for SMA. Only a year ago, it was expected that a child, like Nina, born with severe SMA would never be able to sit or breathe on her own; she would most likely not survive beyond her second birthday. Children, like Mark, with a less severe form might gradually lose his ability to walk and to use his hands…
Why do all Canadians need to sign this petition?
Funding is being negotiated by yet another government agency, the panCanadian Pharmaceutical Alliance (pCPA).
AND THIS IS THE TRAP.
If governments agreed to fund only those SMA patients recommended by the review agencies, INESSS and CADTH, only those infants who are most severely affected will get coverage. And of course we do not want NO delay for these patients. BUT if negotiations are concluded too hastily, we are at high risk of excluding all other SMA patients who could benefit from Spinraza. This is a situation that is equally abhorrent, probably unethical, and undoubtedly devastating for the SMA community.
Which is why Cure SMA Canada and the Canadian Organization for Rare Disorders are calling upon all Canadians to sign this petition, demanding governments include all SMA patients in the funding of Spinraza and to make the drug available immediately.
The Canadian Organization for Rare Disorders Hereby Gives Notice of its Annual General Meeting: August 26, 2024 at 2:00 PM (EDT) via videoconference
CORD Annual General MeetingAugust 26, 2024 at 2:00 PM (EDT) via videoconference Dear CORD Members: The Canadian Organization for Rare Disorders gives notice of it's Annual General Meeting on August 26, 2024 at 2pm - 3pm (Eastern Time). All individual, affiliate and corporate members in good standing are invited participate. An eligible voter must be a representative of a voting member of CORD. Eligible voters may either vote at the upcoming Annual General Meeting videoconference or by proxy. Votes by proxy must be in must be returned to us by August 25, 2024. Ballots received after this date and time, duplicate votes and spoiled ballots will not be counted. To participate in the AGM teleconference, please register by August 25, 2024 Registration: https://bit.ly/4aM8IJL Once we have received your response, we will email you the teleconference details and any other necessary documents that will be required for the meeting. Thank you for your participation and if you have any questions, please let me know. Sincerely, Christine White CORD Secretary PROXY-2024Download
The Canadian Organization for Rare Disorders Hereby Gives Notice of its Annual General Meeting: August 26, 2024 at 2:00 PM (EDT) via videoconference
CORD Annual General MeetingAugust 26, 2024 at 2:00 PM (EDT) via videoconference Dear CORD Members: The Canadian Organization for Rare Disorders gives notice of it's Annual General Meeting on August 26, 2024 at 2pm - 3pm (Eastern Time). All individual, affiliate and corporate members in good standing are invited participate. An eligible voter must be a representative of a voting member of CORD. Eligible voters may either vote at the upcoming Annual General Meeting videoconference or by proxy. Votes by proxy must be in must be returned to us by August 25, 2024. Ballots received after this date and time, duplicate votes and spoiled ballots will not be counted. To participate in the AGM teleconference, please register by August 25, 2024 Registration: https://bit.ly/4aM8IJL Once we have received your response, we will email you the teleconference details and any other necessary documents that will be required for the meeting. Thank you for your participation and if you have any questions, please let me know. Sincerely, Christine White CORD Secretary PROXY-2024Download
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