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Archives for: September 3rd, 2021

Martin’s Fight Against Waldenstrom Macroglobulnemia

Written by Rohan Narayanan on September 3, 2021

I have been a healthy person my whole life. I never drank alcohol or smoked, and I had a good diet. In 2004, I began to have some questionable numbers on blood work, but my primary doctor could never really tell what was going on. My knees shook when I was referred to a hematologist and oncologist in 2010. I was given a diagnosis of Monoclonal gammopathy of undetermined significance (MGUS). I was… Read More

A Life Saving Reminder – Loren’s Rare Cancer Journey

Written by Rohan Narayanan on August 27, 2021

In 2001, I was diagnosed with ocular melanoma. What makes ocular melanoma rare is that only 2,500 people are diagnosed with it each year. Following my diagnosis in October of 2001, I went through numerous tests at Sylvester Cancer Center. In November, I was admitted into the hospital where they implanted a metal plate into my left eye with 20 seeds of radiation, which was removed after a week. Read More

NORD’s Rare Disease Advisory Councils

Written by Valaree DonFrancesco on June 30, 2021

On the show today, it’s all about Rare Disease Advisory Councils – or RDACs, for short. RDACs provide a platform for the rare community to have a stronger voice in state government. Joining us is NORD Director of Policy Heidi Ross, your one-stop human shop to understanding what these councils… Read More

Fifteen Months Later…

Written by Valaree DonFrancesco on June 9, 2021

Today on NORDpod, we welcome back Lesli Nordstrom, Director of Marketing and communications at NORD. As returning champion to the show, she’s back to get real about the rare disease community with reflection on the past 18 months. The pandemic’s impact cannot be understated. Millions of lives have been uprooted… Read More