Volunteering as a Medical Student: Eric’s Story in Honor of National Volunteer Month
By Eric W. “Please don’t forget about me” were some of the last words a leprosy patient told me during my most recent trip to Ecuador. I was in my …
Read morePublished April 5, 2024 by NORD
By Eric W. “Please don’t forget about me” were some of the last words a leprosy patient told me during my most recent trip to Ecuador. I was in my …
Read morePublished March 20, 2024 by NORD
By Karin Hoelzer, Director of Policy and Regulatory Affairs at the National Organization for Rare Disorders (NORD) How should lab developed diagnostic tests (LDTs) be regulated? As the House Energy …
Read morePublished March 6, 2024 by NORD
NORD’s State Report Card grades states on policies that benefit or jeopardize health care coverage, access, and affordability for people living with rare diseases The National Organization for Rare Disorders …
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 28, 2024 by NORD
By Heidi Ross and Karin Hoelzer What needs to be done to better support rare disease patients, and what is the value of the prescription drugs that treat rare diseases? …
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 …
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