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January 24, 2022

TOPIC: Patients & Members

NORD Gives Back: Rare Disease & Family Life

Posted at January 1, 2022 09:00 am by Maia Craig

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 from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum to inspire hope and share experiences for those affected by rare diseases and their families.  … Read More

January 21, 2022

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

Rare Disease Day: Kira’s Story

Posted at January 1, 2022 09:00 am by Maia Craig
This is a photo of Kira

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 Syndrome (TBRS) diagnosis. If you want to share your rare story in honor of Rare Disease Day, visit NORD’s website. 

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January 18, 2022

TOPIC: Patients & Members

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

Posted at January 1, 2022 09:00 am 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

January 14, 2022

TOPIC: Patients & Members

NORD Gives Back: The Future of Rare

Posted at January 1, 2022 09:00 am 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

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