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July 13, 2015

TOPIC: Uncategorized

Member Spotlight: AGMD

Posted by Christina Jensen

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) is an international, non-profit organization that functions as an information resource center for people affected by digestive motility disorders. The organization also serves as an integral resource for members of the medical community. To learn more about AGMD and digestive motility disorders, please visit agmd-gimotility.org

NORD was delighted to learn more about AGMD… Read More

July 10, 2015

TOPIC: Advocacy

NORD Issues Statement on House’s Approval of 21st Century Cures Initiative

Posted by Jennifer Huron

Washington, D.C. – July 10, 2015 – The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on today’s approval by the House of the 21st Century Cures legislative initiative.

Today’s passage in the House of the 21st Century Cures (H.R. 6) bill is a huge win for the rare… Read More

July 6, 2015

TOPIC: Uncategorized

Member Spotlight: CdLS Foundation

Posted by Christina Jensen

The Cornelia de Lange Syndrome Foundation (CDLSF) is a non-profit, family health organization. Established in 1981, the CdLS Foundation exists to ensure early and accurate diagnosis of the syndrome, and help people with CdLS and others with similar characteristics make informed decisions throughout their lifetime. To learn more about Cornelia de Lange Syndrome and CDLSF, please visit http://www.cdlsusa.org

June 29, 2015

TOPIC: Uncategorized

Member Spotlight: AMEN Support

Posted by Christina Jensen

The American Multiple Endocrine Neoplasia Support (AMEN Support) is a voluntary organization whose mission is to provide education and support to patients, their families and medical personnel regarding multiple endocrine neoplasia (MEN) type 1, MEN type 2a, MEN type 2b. To learn about MEN and  AMEN Support, visit their website www.amensupport.org

 

Linda Hageman, co-founder of AMENSupport and Glen Gray, their… Read More

June 26, 2015

TOPIC: Uncategorized

People Magazine Turns Spotlight on Rare Diseases with Personal Stories from Country Music Star Randy Rogers and Model Lauren Wasser

Posted by Christina Jensen

Rare diseases earned some time in the national spotlight this week, thanks to two new articles that People magazine posted on its website.

Randy Rogers band tweet

Randy Rogers, lead-act in the Randy Rogers Band, lost his 6-day-old baby girl, Rumer, to Nonketotic Hyperglycinemia (NKH), a rare disease that is characterized by the accumulation of… Read More