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EBAN: Epidermolysis Bullosa ACTION Network
The Epidermolysis Bullosa (“EB”) Action Network is a nonprofit charitable organization committed to accomplishing the following objectives: To serve and revitalize the EB community with integrity and determination;
To take action wherever needed to modify public policies that impact the lives of EB sufferers;
To work as an advocate for EB sufferers and affected families to improve their quality of life and help ease their financial burdens;
To facilitate the exchange of reliable information and foster cooperation with other EB organizations, the medical community, the educators, and the government;
To develop programs in response to issues of common concern, or of common interest;
To promote and cultivate respectful discussion, tolerance and understanding, thereby functioning as an agent to propagate awareness about the devastating disease we live with; and
To provide a platform for communication, to stimulate and improve conditions that will benefit individuals in need and the EB community as a whole.
These are the goals we have set, and we are dedicated to this purpose.
Ebanusa.org ~
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