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CJDISA: CJD International Support Alliance

CJD International Support Alliance

The CJD International Support Alliance (CJDISA) was formed by a group of grassroots nonprofit organizations that share one vital factor: a commitment to prion disease victims, their families, and those at risk for prion disease. CJDISA was founded to fill the gap that exists on an international level and to assure excellence in the service to individuals affected/at risk of prion disease, their families, and caregivers. The participating organizations are dedicated to work together in meeting the educational, social, emotional, spiritual and practical needs of those they represent. Under the CJDISA umbrella, these organizations collaborate on educational initiatives, information dissemination, resource allocation, program design and implementation, and advocacy.

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The film that educates about CJD and other prion diseases

This one-hour film clip contains a comprehensive consideration of the different forms of prion disorders: sporadic, familial, and acquired...
 
For more information, please go to this section.


Mission

To work together as an international coalition on behalf of patients and families affected by prion disease the world over.

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Vision

Work together in meeting the educational, social, emotional, spiritual and practical needs of those we represent. Those we represent will be empowered by current, relevant information and support designed to meet their needs. By providing an interactive forum linking various prion disease support organizations, we promote the development of a highly improved care delivery system for those affected by prion disease through medical education, advocacy work, and the development of regulations that bring about positive change.

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Goals

Assure excellence in the service to individuals affected/at risk of prion disease, their families, and caregivers.

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Objectives

  • To always keep those we represent clearly in focus and to act only on those issues that benefit them.
  • To remain impartial and free from political pressures and personal bias again, always keeping in mind those we represent.
  • To share resources and information regarding prion disease research and, when appropriate, act together to report and publicize progress and hope from this research.
  • To carry out activities on behalf of the Alliance only with mutual consent and with a unified global voice.
  • When we become concerned about an issue or issues we work together to make a united statement in an effort to bring about positive change.
  • Maintain confidentiality

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Memberships

To have a full list of contacts please go to this page.

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