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Archives for: July 15th, 2021

NORD Named an Official Charity Partner of the 2021 TCS New York City Marathon

Written by Rohan Narayanan on July 15, 2021

Washington, DC – The National Organization for Rare Disorders® (NORD) was named an Official Charity Partner for the 2021 TCS New York City Marathon, taking place on November 7. This year serves as the 50th celebratory running of the marathon. NORD will be among the more than 400 official charity partners… Read More

NORD’s Mary Dunkle Comments on Diagnosis Challenges and Urges Caution on Using Internet Sources in New Article

Written by Valaree DonFrancesco on August 20, 2019

In a recent article published by HealthDay entitled “‘Dr. Google’ Helps Some Patients Diagnose a Rare Disease,” NORD’s Mary Dunkle notes common reasons for rare disease diagnosis delays and cautions patients and caregivers regarding online sources, recommending that people “use only trusted sources such as the U.S. National Institutes of… Read More

A Group No One Applies to Join

Written by Jennifer Huron on September 14, 2016

By Elizabeth Silva Anderson, ECD Global Alliance, a NORD Member Organization

An interview with Erdheim-Chester Disease patient, Janet Bunge, in honor of Erdheim Chester Disease Awareness Week (#ECDAwareness), Sept. 12-17, 2016

I belong to ECD. A group which no one applies to join.” The spirited mother of four recounts a tale… Read More

Illinois Man Uses His Myelofibrosis Story to Help Others

Written by on July 16, 2014

The diagnosis of primary myelofibrosis (MF), one of three main myeloproliferative neoplasms (MPNs), came as a huge surprise for Bill Erickson in May 2012. According to the MPN Research Foundation, patients with MF have scar tissue buildup in their bone marrow, which prevents normal blood cells from being produced. Since blood cell… Read More