Enregistrement - Lobbyistes-conseils

Objets

• Impôts et finances
• Justice et application des lois
• Recherche et développement
• Santé
• Sciences et technologies

Détails sur l'objet

Politique ou Programme

• Advocating for the use of precision medicine tools in access to medicines decision-making processes.
• Common Drug Review, importance of meaningful public/patient input into the drug review process
• Encouraging the development of a rare disease strategy in Canada (similar to the policies for rare diseases in Europe and the United States).
• Improving access to precision medicines for Canadians with cystic fibrosis and other rare diseases.
• Participating in consultations on national pharmacare
• With respect to Health, we advocate for access to cystic fibrosis (CF) medicines and treatments, the development of a rare disease strategy, and for improved access to disability supports for people with CF. This includes any funding required to support the development and implementation of these policy and legislative proposals. The exact amount of funding has yet to be established and would involve further discussions with government officials.
• With respect to disability, we advocate for recognition of and supports for people with episodic disabilities.

Règlement

• Health Canada with respect to the regulation of pancreatic enzymes used in the management of cystic fibrosis. Recommend product should be listed on Schedule F to the Food and Drugs Regulations.
• Participated in consultations on regulatory changes to the Patented Medicines Price Review Board (PMPRB) and provided written submissions.

Subvention, Contribution ou autre avantage financier

• In terms of research and development, we lobby for support of cystic fibrosis research initiatives that improve the health and wellness of Canadians living with cystic fibrosis.
• In terms of science and technology, we work toward the development of precision and personalized medicines that target the basic defect of cystic fibrosis. We are exploring how the federal government may support these efforts through partnership and funding.
• Increased federal investment in health-related research. We worked with the Health Charities Coalition of Canada (HCCC) to draft content for a press release urging the federal government to invest more in basic science in Canada.

Techniques de communication

• Communication écrite
• Communication orale

Institutions gouvernementales

• Agence de la santé publique du Canada (ASPC)
• Agence du revenu du Canada (ARC)
• Cabinet du Premier ministre (CPM)
• Chambre des communes
• Conseil d'examen du prix des médicaments brevetés (CEPMB)
• Finances Canada (FIN)
• Instituts de recherche en santé du Canada (IRSC)
• Santé Canada (SC)
• Sénat du Canada
• Statistique Canada (StatCan)

Adresse :
2323 Yonge Street
Suite 800
Toronto, ON  M4P 2C9
Canada

Numéro de téléphone : 416-485-9149  Poste 238
Adresse Web : https://www.cysticfibrosis.ca/

Représentant du client

Kelly Grover, President and Chief Executive Officer

Renseignements sur la société mère

Fibrose kystique Canada / Cystic Fibrosis Canada n'est pas une filiale d'une société mère.