Rare Disease News

Caring for a Rare Parent: Dulce’s Story in Honor of National Family Caregivers Month

Published November 20, 2023 by NORD

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Patient Stories

By Dulce Q. This is the story of my extraordinary father, a man who courageously faced dementia, triumphed over colon cancer, and grappled with the relentless advance of Amyotrophic Lateral …

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Volunteer Spotlight: Dr. Kristen Kingzett

Published October 28, 2023 by NORD

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Celebrating internal medicine physicians on National Internal Medicine Day We continue to be inspired by our advocates and volunteers who drive recognition of rare disease as an urgent public health …

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The Importance of Advancing Treatment Options: Toni’s Story in Honor of Rare Cancer Day

Published September 30, 2023 by NORD

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NORD is proud to share this patient story in recognition of Rare Cancer Day 2023. Learn about Rare Cancer Day here. My name is Toni, and in 2015, I was …

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The Privilege of Access to Care: Jennifer B.’s Story in Honor of Rare Cancer Day

Published September 30, 2023 by NORD

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NORD is proud to share this patient story in recognition of Rare Cancer Day 2023. Learn about Rare Cancer Day here. My name is Jennifer and I am from Holly …

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Volunteer Spotlight: How Judy Advocated for Better Access to Care for Rare Hawaii Residents

Published August 19, 2023 by NORD

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This year, NORD Advocate Judy A. testified before the Hawaii state legislature, leading Hawaii to pass a law making it easier for residents with rare diseases to access out-of-state physicians …

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Kerry’s Kaleidoscope of Rare Disease Stories

Published August 19, 2023 by NORD

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Patient Stories

By Kerry Wong I am writing a book because there are so many incredible stories that need to be told, and so many people who need to hear (or read) …

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Trans and Rare: How my experience as a trans patient prepared me to navigate health care as a rare disease patient

Published June 21, 2023 by NORD

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Patient Stories

By yannick-robin eike mirko I am one of the 47% of trans adults who have found that health-care providers know “not too much” or “nothing at all” about providing care …

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From Life-Changing Clinical Trials to Running for Rare: Justin’s Journey as a Rare Disease Father

Published June 17, 2023 by NORD

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Patient Stories

By Justin H. My name is Justin, and I am a father of three, including my youngest son Garrett. Garrett entered the world appearing healthy like his older brother and …

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When Chemo Leads to Gender Euphoria: My Journey to Queer Joy

Published June 16, 2023 by NORD

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Patient Stories

By Rebekah P. (she/they) It was because of a rare cancer that I came into understanding my gender and sexuality. Of course, I wasn’t cognizant of this and didn’t put …

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Quintissa’s Rare Disease Story in Honor of World Blood Donor Day

Published June 14, 2023 by NORD

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Patient Stories

By Quintissa P. My name is Quintissa and I was born with sickle cell anemia. As a result of this condition, my hematologist has estimated that I’ve received well over …

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