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