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Cedar Rapids Gazette in Cedar Rapids, Iowa

01 Dec 2002

Page 9

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Cedar Rapids Gazette December 1, 2002 Page 9 old newspaper archives

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Newspaper

Cedar Rapids Gazette

Location

Cedar Rapids, Iowa, United States of America

Date

Dec 01, 2002

Page

9

Net links parents of very ill children online

Alicia Chang reports from Ossining New York how families coping with rare genetic diseases turn to the Internet for support and research. Derek Sedefian’s Barth Syndrome highlighted the role of online networks in uniting parents, sharing experiences, and funding research across states and countries.

MENTIONED IN THIS ARTICLE

Alicia Chang Ree Oss Voorheesville N.Y Derek Sedefian Lynda Greg Sedefian Boston Children’s Hospital Derek Barth Lynda Sedefian Illinois Pierre Robin Pennsylvania Texas Carolyn Bay Abbey Meyers NORD Fairfield Conn Voorheesville Albany Barth Syndrome Foundation Bowens Florida Wilkinses Nebraska Dunns Massachusetts Sedefian Bay Balogs Zachary
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Rare diseases unite families through the Internet

A Pittsburgh area geneticist treats Batten disease and families rally online for research and support. NORD notes more than 6,000 orphan diseases affecting about 25 million Americans, with patients turning to groups like the Barth Syndrome Foundation and Rett syndrome network for connection and fundraisers.

MENTIONED IN THIS ARTICLE

Nord NIH Office of Rare Diseases Barth Syndrome Foundation Barthsyndrome International Rare Diseases Support Network Raredisorders Children’s Hospital of Pittsburgh National Organization For Rare Disorders
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Also Mentioned on This Page

Net Kathy Hunter International Herman I. Abramowitz Dayton Ohio American Medical Association San Balog Cranberry Township Nathan's Kota Spirit University of Iowa Dancemarathon.org Carrie Wall Ewall Blue Weeg Uiowa UIHC U of Iowa United States Nancea University of Tanger POLO Ralph Lauren Carter's Lewis GAP BASS Liz Claiborne Reebok Fossil Sara Lee Owen Legg Tangeroutlet.com Williamsburg Cedar Rapids
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