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February 2001 Volume 4, Issue 3:
Did You Know?
02.01.00

New Link to Clinical Trial Information

The IMF has formed a partnership with HopeLink.com to provide user-friendly clinical trial information to the myeloma community. For the latest information, go to the Hopelink web site.

Organizations That Help Children 

The IMF has received a number of calls from members asking about organizations that help children cope with a parent’s cancer diagnosis. We wanted to pass along information about two resources:

Kids Konnected 
27071 Cabot Road, Ste. 102
Laguna Hills, CA 92653
(800) 899-2866
www.kidskonnected.org
Kids Konnected was started by an 11-year-old while his mother battled breast cancer. Some IMFers’ children are involved with the program and find it beneficial.

The Dougy Center
3909 S.E. 52nd Avenue, P.O. Box 86852
Portland, OR 97286
(503) 775-5683
www.dougy.org

The Dougy Center offers a guidebook series designed to help adults learn how to best deal with their children following the diagnosis and throughout the battle with cancer. This group charges a fee for publications.

Obtaining Thalidomide Outside the U.S.

The distribution of thalidomide in the U.S. is strictly controlled through a safety and education program called S.T.E.P.S. (System for Thalidomide Education and Prescribing Safety) which is mandated by the FDA and administered by Celgene Corp. At the present time, Celgene is not exporting thalidomide on a commercial basis to other countries but does make the drug available on a single patient compassionate use basis strictly limited to Canada. For information on the availability of thalidomide in the U.K., contact IMF(UK). In other countries, contacting the drug regulatory agencies may be the best way to obtain the product.

Support Group Welcomes New Members

The Wichita, Kansas myeloma support group has grown from 15 to 35 participants. The group meets monthly and offers state-wide phone support to those living outside Wichita. For information, contact Judy Jones at (316) 773-4910 or judithdjones@cs.com.


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