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STRATEGIC PLAN 2007 - 2012. KEY ACTIVITY AREA 3.
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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5 for 5 Campaign
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