For the past seven years, ALS Quebec has been partnering with Neuro Partners, a group of five organizations dedicated to supporting people living with a degenerative neurological disease and their caregivers. Speaking with one voice, these organizations advocate for the needs of those they represent in addressing political decision-makers.
On February 14, 2024, Partenaires neuro published an open letter in Le Devoir, along with its manifesto for access to innovative treatments, to raise public awareness of the issues facing people affected by degenerative neurological diseases. Both publications are published in French only.
“At a time when the Quebec healthcare system is undergoing major reorganization, Neuro Partners believes it is essential to remember that patients remain the main priority in the restructuring that is being undertaken.
It is in this context that the group wishes to draw attention to a particularly vulnerable public with legitimate expectations for improved access to innovative treatments: people with degenerative neurological diseases.
Neuro Partners is raising the alarm on the urgent need to accelerate access to innovative treatments, and has taken the initiative of drafting a brief summarizing the challenges and concerns, which presents recommendations and possible solutions, primarily aimed at public decision-makers”.
– Neuro Partners
To read the manifesto (in French only): https://bit.ly/3SC1jFJ
To read the open letter (in French only): https://bit.ly/42Ji7PF
Neuro Partners at the Quebec National Assembly
Neuro Partners visited the Quebec National Assembly on Wednesday, February 21, to highlight the importance of simplifying research funding and facilitating access to innovative treatments for degenerative neurological diseases. Several meetings were held with deputies and ministers.
Thank you to the representatives of the 5 organizations who made their voices heard loud and clear.
