News - NORD (National Organization for Rare Disorders)

January 18, 2022

NORD Gives Back: Working, Aging or Living with a Rare Disease

Posted by Maia Craig

After being diagnosed with a rare disease, your life can change drastically. 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 to inspire hope for those affected by rare diseases and their families.

Let’s continue the important conversations regarding the rare… Read More

Tags: rare disease community, Living Rare Living Stronger Patient and Family Form, Living Rare, #LivingRareForum, diagnostic odyssey, NORDGivesBack

January 14, 2022

TOPIC: Patients & Members

NORD Gives Back: The Future of Rare

Posted by Maia Craig

As we enter this new year, we are looking toward the future of the rare disease community. 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, this dynamic content from… Read More

Tags: rare disease community, Living Rare Living Stronger Patient and Family Form, Living Rare, #LivingRareForum, NORDGivesBack

January 12, 2022

TOPIC: Patients & Members

NORD’s Rare Cancer Coalition 2021 Year In Review

Posted by Maia Craig

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

Tags: Rare Diseases and Orphan Products Breakthrough Summit, rare cancer, CME, rare cancer day, rare cancer coalition, diagnostic odyssey, DEI, health equity, Head of the Herd

January 11, 2022

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

Rare Disease Day: Finn’s Story

Posted by Maia Craig

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

Tags: Rare Disease Day, rare disease patient, Share Your Story, congenital muscular dystrophy, SELENON/SEPN1-related myopathy, Cure CMD

December 27, 2021

TOPIC: Patients & Members, Patient Stories

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

Posted 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

Tags: FDA, rare disease, treatment, patient story, rare autoimmune diseases, Patient, rare disease patient, HLA B27 autoimmune disease, autoimmune disease

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January 18, 2022

NORD Gives Back: Working, Aging or Living with a Rare Disease

Posted by Maia Craig

January 14, 2022

NORD Gives Back: The Future of Rare

Posted by Maia Craig

January 12, 2022

NORD’s Rare Cancer Coalition 2021 Year In Review

Posted by Maia Craig

December 27, 2021

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

Posted by Rohan Narayanan

Topics

Alone we are rare. Together we are strong.®