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January 12, 2022

TOPIC: Patients & Members

NORD’s Rare Cancer Coalition 2021 Year In Review

Posted at January 1, 2022 09:00 am by Maia Craig
NORD's Rare Cancer Coalition logo

NORD’s Rare Cancer Coalition (RCC) worked hard in 2021 to raise awareness for rare cancers and tackle issues that patients and caregivers face, such as access to care, treatments, and research. 

At the start of 2021, NORD and our RCC members partnered with PlatformQ, one of the nation’s… Read More

January 11, 2022

TOPIC: Patients & Members, Patient Stories, Rare Disease Day

Rare Disease Day: Finn’s Story

Posted at January 1, 2022 08:30 am by Maia Craig
This is a photo of Finn.

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Finn’s congenital muscular dystrophy (CMD) journey and his parent’s goal of connecting with others navigating a SELENON/SEPN1-related myopathy diagnosis. If you want to share your rare story in honor of Rare… Read More

December 27, 2021

TOPIC: Patients & Members, Patient Stories

Far From “Normal”: Brenda’s Rare Disease Story

Posted at December 12, 2021 08:30 am by Rohan Narayanan

I’m as “normal” as anyone else. I look completely “normal” (besides being in an orthopedic brace), I act completely “normal,” and my life is completely “normal”. I have been married for 40 years and have two adult children and three grandchildren. I have worked with my husband in his private optometry practice for 20 years and help with the daily care of our 11-year-old grandson. My life is full, happy, active and busy – as “normal” as I may assume some of yours are. 

However, I am far… Read More

December 22, 2021

TOPIC: Patients & Members

NORD Gives Back: Partnership and Connection

Posted at December 12, 2021 09:00 am by Maia Craig

It’s the holiday season, so let’s take time to celebrate the rare disease community. During this joyful time, the National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum. From engaging plenaries to breakout sessions to speakers from across the globe, the dynamic content from the conference is here… Read More

December 20, 2021

TOPIC: Medical, Patients & Members, Research

Helping Rare Disease Patients: A Conversation with Dr. Neilan about the Rare Disease Centers of Excellence Program

Posted at December 12, 2021 08:00 am by Jennifer Huron

In November, NORD announced the launch of its Rare Disease Centers of Excellence program, which aims to improve medical care for people living with rare diseases. The program has ambitious goals, including to help to shorten the time to diagnosis, to inform and establish treatment protocols where they do not currently exist, to facilitate more equitable access to… Read More