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- About CJD
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- GINA Act
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- CJD Foundation Family Conference
- Letter From The American Red Cross
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CJD Foundation Family Conference
In 2002 we hosted our first CJD Foundation Family Conference in Washington D.C. with the hope that families and researchers could learn from each other if we brought them together. We found that the conference provided a unique opportunity for attendees to begin or continue their healing process. It was also the first time many of the scientists had ever met a family member touched by the disease they were spending their lives researching.
During these years The CJD Foundation Family Conference has grown, attracting many more North American families as well as families from other countries. We’ve added a Family Workshop Friday afternoon to offer an opportunity for families affected by a genetic prion disease to meet and discuss issues of concern.
Saturday is devoted to learning about the latest scientific discoveries. With the help of Dr. Pierluigi Gambetti, our Medical Director, we invite scientists conducting new and promising prion disease research to speak to our families about their work. On Sunday we hear about the work of the CJD Foundation including an overview of the information collected through our Questionnaires.
Monday is devoted to visiting your state representatives on Capitol Hill. We set up the appointments for those families wishing to participate and provide advocacy training on Sunday afternoon. This is a unique opportunity to tell your story to your elected representatives and to ask for financial support for prion disease research and for the strengthening of food safety policies.