Published November 25, 2024 by NORD
On average, it can take five years – or more – for a rare disease to be correctly diagnosed. For Sharon Drennan and her son Rob, it took 15. “Rob …
Continue reading “A 15-Year Diagnostic Odyssey”
Read morePublished November 20, 2024 by NORD
If there is any message that Kate Kelly could share with her fellow rare disease caregivers, it’s this: You’re not alone. “There are moments when you get caught up in …
Continue reading “Rare Disease Caregivers: You’re Not Alone”
Read morePublished October 16, 2024 by NORD
By Curtis Mar The medical marvel of anesthesia was demonstrated for the first time 178 years ago at Massachusetts General Hospital. That day is commemorated today by World Anesthesia Day. …
Read morePublished September 4, 2024 by NORD
By Sydney Collier I was told at seven years old I wasn’t supposed to be alive. It sounds dramatic, but it’s the truth. An MRI told us it was true: …
Continue reading “Beyond Expectations: A Paralympian Equestrian Beats the Odds to Achieve Her Dream”
Read morePublished June 14, 2024 by NORD
In honor of Father’s Day, NORD spoke with volunteer advocate Steve K., father to two-year-old Hannah, about his connection to rare disease through his late wife, Stacey. Read about Steve’s …
Continue reading “Grief as Fuel for Advocacy: Steve’s Story in Honor of Father’s Day”
Read morePublished April 29, 2024 by NORD
By Lori W. My name is Lori, and I am currently dealing with a surreal undiagnosed cancer. For five years now, I have tried to figure out the mystery and …
Read morePublished February 29, 2024 by NORD
By Gabrielle Z. A very special person once told me: “You are dealt the cards in this life that only you are meant to handle.” My name is Gabrielle but …
Read morePublished February 29, 2024 by NORD
By Risa A. My name is Risa and I have Acromegaly. From the NORD Rare Disease Report: Acromegaly is a rare, slowly progressive, acquired disorder that affects adults, most …
Continue reading “Living a Full Life After Diagnosis: Risa’s Story in Honor of Rare Disease Day”
Read morePublished February 27, 2024 by NORD
By Tanita A. My name is Tanita and I am an African-American woman living with Huntington’s Disease. I did not have a family history of Huntington’s Disease; I am the …
Continue reading “We Exist: Tanita’s Experience as a Black Woman with Huntington’s Disease”
Read morePublished February 26, 2024 by NORD
By Allison R. My ultra-rare disease, Cryopyrin Associated Periodic Syndrome (CAPS) has been isolating, defeating, and has made me feel helpless—but not hopeless. It has caused changes of career paths …
Read morePublished February 23, 2024 by NORD
By Sareena Z. My name is Sareena and I was diagnosed with severe Factor VII deficiency when I was two months old. I am now 28 years old. Factor VII …
Continue reading “Overcoming the Obstacles: Sareena’s Story in Honor of Rare Disease Day”
Read morePublished February 16, 2024 by NORD
By Thomas B. I’m a patient living with Myasthenia Gravis, a rare neuromuscular autoimmune disease that affects the voluntary muscles. The immune system kills the chemical receptors in our muscles …
Read morePublished February 9, 2024 by NORD
By Leigh P. I was diagnosed with Graves’ disease in 2019 after four consecutive miscarriages and a lifetime of symptoms that were misunderstood by professionals. A person with Graves’ …
Continue reading “Invisible Stripes: Leigh’s Story in Honor of Rare Disease Day”
Read morePublished November 20, 2023 by NORD
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 …
Read morePublished October 28, 2023 by NORD
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 …
Continue reading “Volunteer Spotlight: Dr. Kristen Kingzett”
Read morePublished September 30, 2023 by NORD
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 …
Read morePublished September 30, 2023 by NORD
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 …
Continue reading “The Privilege of Access to Care: Jennifer B.’s Story in Honor of Rare Cancer Day”
Read morePublished August 19, 2023 by NORD
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 …
Read morePublished August 19, 2023 by NORD
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) …
Continue reading “Kerry’s Kaleidoscope of Rare Disease Stories”
Read morePublished June 21, 2023 by NORD
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 …
Read morePublished June 17, 2023 by NORD
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 …
Read morePublished June 16, 2023 by NORD
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 …
Continue reading “When Chemo Leads to Gender Euphoria: My Journey to Queer Joy”
Read morePublished June 14, 2023 by NORD
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 …
Continue reading “Quintissa’s Rare Disease Story in Honor of World Blood Donor Day”
Read morePublished May 26, 2023 by NORD
By Lena Z. I was born with two rare diseases: medullary sponge kidneys (MSK), a birth defect where changes occur in the tiny tubes inside a fetus’ kidneys, and hypermobile Ehlers-Danlos …
Continue reading “The Healing Power of Movement: Lena’s Rare Disease Story”
Read morePublished April 29, 2023 by NORD
By Jessica F. This story is about Sophie, my now 10-year-old daughter who is impacted by limb girdle muscular dystrophy type 2A/R1, previously misdiagnosed and treated for necrotizing myositis. Sophie’s …
Continue reading “Undiagnosed: When Your Child Is Misdiagnosed”
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