The Canadian MPS Society welcomes the news that the Government of Quebec has unveiled its policy for rare diseases which affect approximately 700,000 people in the province in order to improve the accessibility of health care and services adapted to the needs of patients and their families.
The Quebec government is the first jurisdiction in Canada to develop a policy for rare diseases. This is an important first step in acknowledging the unique complexities faced by Canadians living with rare diseases such as MPS and the changes needed to ensure patients have access to the care and treatments they deserve.
The “Quebec Policy for Rare Diseases” is based on three main areas: awareness and training of health professionals, easy and equitable access to diagnosis, care and services, and the promotion of research, innovation and data collection.