CFW Programs

KEY ACTIVITY AREA 3 – Provide local and international policy and political support to Cystic Fibrosis Associations and people living with cystic fibrosis

	Goal 3 Be a leader in political and policy support for persons living with cystic fibrosis globally.

Objective 1:
Develop a network with partners in the cystic fibrosis global community such as Cystic Fibrosis Worldwide members, international working groups and the World Health Organization to bring awareness of cystic fibrosis and the needs of persons with cystic fibrosis at the local and international levels in government, health and public sectors.

Strategies:
• Lobby to have necessary medicines for cystic fibrosis included on the WHO necessary drug list
• Assist in the development of a global registry to bring awareness of the prevalence of cystic fibrosis
• Facilitate epidemiology studies among large populations in areas where cystic fibrosis is thought to not exist or is considered rare
• Support regional projects to increase awareness and support for persons living with cystic fibrosis

Objective 2:
Lobby governments and private sectors of individual countries to ensure support for persons living with cystic fibrosis.

Strategies:
• Support persons living with cystic fibrosis who are experiencing segregation or human rights violations because of cystic fibrosis (letters to officials, information translated in local languages and access to renowned opinion leaders)
• Lobby for access to medicines and appropriate treatment for all people with cystic fibrosis
• Utilize the member network and partnerships with international cystic fibrosis working groups and scientific bodies to ensure appropriate care levels are achieved

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