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July 6, 2015

TOPIC: Sticky Posts for Homepage

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 30, 2015

TOPIC: Sticky Posts for Homepage

Requests for Proposals

Posted by Christina Jensen
Requests for Proposals (1)

The NORD Research Grant Program provides seed-money grants to academic scientists for scientific and/or clinical research. The hope is that these studies will ultimately lead to new diagnostics, treatments, and/or cures for rare diseases. NORD’s program provides grants for the study of diseases for which there are few other sources of funding. Grants provided through the NORD program are… Read More

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

June 22, 2015

TOPIC: Sticky Posts for Patient Organizations

Member Spotlight: UMDF

Posted by Christina Jensen

 

The UMDF Mission is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.  To learn more about UMDF, please go to: www.umdf.org

1.)   What does it mean to you personally to be a patient organization serving the rare community?

  1. Fulfilling a necessary need to a group that… Read More