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FMDQ
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(8/27/04 2:35 pm)
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National Organization for Rare Disorders - See conferece
The following news is brought to you by the National Organization for Rare Disorders.

Mark your calendar for these upcoming NORD events!

NORD 2004 Family Conference
Pediatric surgeon and author Pamela Gallin will share her tips for making wise health decisions when she speaks at the 2004 NORD Family Conference in the Minneapolis area in October. Dr. Gallin, of Columbia-Presbyterian Medical Center in New York City, is the author of How To Survive Your Doctor's Care and The Savvy Mom's Guide to Health Care, a Book-of-the-Month Club selection. Since 2001, she has been listed in Best Doctors in America.

The Conference will also feature leading researchers from the National Institutes of Health (NIH) and representatives of patient organizations. The NIH Office of Rare Diseases is co-sponsoring the event.

"We think it's going to be our best conference ever," said Jean Campbell, vice president for development at NORD. There will be two tracks of workshops-one for patients and their families and one for leaders or representatives of patient organizations. In addition, there will be general sessions on topics such as how new treatments are developed, how to work effectively with government agencies, and what to expect from clinical trials.

Adults and kids of all ages are welcome at the NORD Family Conference. The schedule includes an optional tour of the region and opportunities to network with NIH researchers, as well as individuals and families affected by rare disorders. The dates are Oct. 15 to 17. For information or to register, contact Donna Bolton (dbolton@rarediseases.org or 203 744-0100) or go to www.rarediseases.org.

NIH Regional Workshop
Leaders of rare-disease patient organizations are invited to attend a regional training workshop to be held in Philadelphia on January 28-30. This workshop is sponsored by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH).

"Gaining Access to Research Resources" will be the topic. The workshop is intended for executive directors or board members of rare-disease voluntary health agencies. NORD is coordinating the event under contract to the NIH ORD.

The workshop will take place at the Radisson Plaza Warwick Hotel. Attendance is by invitation, and is open to voluntary health agency executive directors or board members who have not previously attended a regional meeting in 2004. (Meetings were held earlier in New York City and San Francisco.)

Anyone interested in attending should contact Jean Campbell (jcampbell@rarediseases.org) or Susan Olivo (solivo@rarediseases.org) at the NORD Development Office (203 744-0100) or go to www.rarediseases.org for more information.


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