Published January 24, 2022 by NORD
Being a family member or friend of someone with a rare disease can be a challenging experience. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content …
Continue reading “NORD Gives Back: Rare Disease & Family Life”
Read morePublished January 21, 2022 by NORD
Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Kira’s journey with a Tatton-Brown Rahman …
Continue reading “Rare Disease Day: Kira’s Story”
Read morePublished January 20, 2022 by NORD
RareLaunch provides critical hands-on learning and support to build capacity for rare disease-focused organizations January 20, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced enhanced …
Read morePublished January 18, 2022 by NORD
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 …
Continue reading “NORD Gives Back: Working, Aging or Living with a Rare Disease”
Read morePublished January 14, 2022 by NORD
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 …
Continue reading “NORD Gives Back: The Future of Rare”
Read morePublished January 11, 2022 by NORD
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 …
Continue reading “Rare Disease Day: Finn’s Story”
Read morePublished December 27, 2021 by NORD
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 …
Continue reading “Far From “Normal”: Brenda’s Rare Disease Story”
Read morePublished December 22, 2021 by NORD
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 …
Continue reading “NORD Gives Back: Partnership and Connection”
Read morePublished December 20, 2021 by NORD
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 …
Read morePublished December 3, 2021 by NORD
Once, I was an intelligent, well-traveled and active African American entrepreneur in my middle 40’s who had opportunities to do wonderful things in the world. My passion was to help disabled people of all ages improve their lives. I was fortunate enough to be an icon as the first woman in technology to educate thousands of individuals …
Continue reading “Dianna’s Story as a Rare Survivor”
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