Current Events

Monday, January 8, 2018 - 6:00pm

This group meets one Monday each month in Manhattan.
Upcoming meetings: February 12, March 5, April 9, May 7 and June 4.

For more information, email Help@cjdfoundation.org.

Monday, February 12, 2018 - 6:00pm

This group meets one Monday each month in Manhattan.
Upcoming meetings: March 5, April 9, May 7 and June 4.

For more information, email Help@cjdfoundation.org.

Wednesday, February 28, 2018 - 9:00am

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 and is now observed in more than 80 nations. For more information about Rare Disease Day in the U.S., visit www.rarediseaseday.us.

Coming in 2018

CJD Foundation Family Conference in Washington, D.C.
Friday, July 13, 2018 - 9:00am

Please join us for the 2018 CJD Foundation Family Conference, July 13 to 15, in Washington, D.C.

The CJD Foundation's Family Conference, held annually in Washington, D.C., brings together prion disease experts and families affected by prion disease.

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.

The CJD Foundation Family Conference has grown over the years, 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 our Medical Director and Scientific 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.

To learn more about the Family Conference, call 1-800-659-1991 or email us at help@cjdfoundation.org.

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