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Archives for: September 30th, 2021

Loneliness, Connection and Mesothelioma: Tamron’s Rare Disease Story

Written by Rohan Narayanan on September 30, 2021

I was diagnosed with peritoneal mesothelioma in 2007 as a 21-year-old new mother. When the doctor told me I had peritoneal mesothelioma, I didn’t know what it was. I was overwhelmed with shock and confusion with so many questions about this rare disease and how little information seemed available. Mostly, I felt alone. Feeling alone… Read More

Timing and Access: Katherine’s Rare Cancer Story

Written by Rohan Narayanan on September 30, 2021

I was a healthy 27-year-old with no underlying risk factors when I was diagnosed with appendix cancer. 

One evening, I started cramping in my abdomen. I thought nothing of it until the intensity increased and I could barely sit upright or walk. I called my primary care provider and she recommended I go to the emergency room,… Read More

Cure MLD, The Calliope Joy Foundation and NORD Launch A Research and Engagement Study of Metachromatic Leukodystrophy (MLD)

Written by Rohan Narayanan on August 16, 2021

Research study is open to participants worldwide to advance understanding and treatments for Metachromatic Leukodystrophy, a recessive genetic disorder that is characterized by the accumulation of fats (lipids) called sulfatides causing damage to the nervous system

Washington, DC, August 16, 2021—Cure MLD, an initiative of The Calliope Joy Foundation, and the… Read More

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