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Archives for: February 11th, 2020

NORD Introduces This Year’s Rare Disease-Fighting Super Group: The 2020 Rare Impact Award Honorees!

Written by Laura Mullen on February 11, 2020

Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare Impact Award honorees. These exceptional individuals, organizations and industry innovators will be honored for their outstanding work for the rare disease community on May 15, 2020, in… Read More

CdLS Biennial National Family Conference

Written by Lisa Sencen on June 23, 2016

Our biennial national family conference provides education and support to families of individuals with CdLS.conference2016

Attendees receive free head-to-toe consultations with experts from a range of medical and educational fields; attend workshops on legal concerns, educational issues and medical/behaviors challenges; and have… Read More

Member Spotlight: CdLS Foundation

Written by Lisa Sencen on July 6, 2015

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… Read More

NORD Volunteer Sheds Light on CdLS for CdLS Awareness Day

Written by Lisa Sencen on May 9, 2015

Today is CdLS Awareness Day. Cornelia de Lange Syndrome (CdLS) is a genetic disorder present from birth, but not always diagnosed at birth. It causes a range of physical, cognitive and medical challenges and affects both genders equally (cdlsusa.org). Today’s awareness day for CdLS is to shed a light on… Read More