Published June 19, 2020 by NORD
At the head of the herd is… Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America Beverley advocates for those living with… sickle cell disease. How …
Read morePublished June 12, 2020 by NORD
I was diagnosed with toxic acute progressive leukoencephalopathy, a rare brain disease that took me from a high functioning and able-bodied individual to locked in syndrome, in six months. This …
Continue reading “Rare Reflections: Jacob’s Story”
Read morePublished May 22, 2020 by NORD
At the head of the herd is… Emile Najm, Chief Executive Officer, KAT6A Foundation Emile most frequently checks his… Facebook account Emile advocates for those living with… A rare syndrome …
Continue reading “Head of the Herd: Emile Najm, KAT6A Foundation”
Read morePublished March 20, 2020 by NORD
Head of the Herd: Michele Sloan, Foundation to Fight H-abc At the head of the herd is… Michele Sloan, Director, Foundation to Fight H-abc Michele most frequently checks her… Facebook …
Continue reading “Head of the Herd: Michele Sloan, Foundation to Fight H-abc”
Read morePublished March 6, 2020 by NORD
At the head of the herd is… Akiva Zablocki, President, The Hyper IgM Foundation Akiva most frequently checks his… https://www.facebook.com/Akiva Akiva advocates for those living with… hyper IgM syndrome Akiva …
Continue reading “Head of the Herd: Akiva Zablocki, The Hyper IgM Foundation”
Read morePublished February 29, 2020 by NORD
I suffer from neuromyelitis optica, or NMO disease (sister of MS, also known as Devic syndrome) and chronic pain. I experienced my first attack in the summer and now am …
Continue reading “Savannah’s Story in honor of Rare Disease Day”
Read morePublished February 29, 2020 by NORD
I was diagnosed with afibrinogenemia when I was just one day old. The day I was born my heel sticks would not stop bleeding, which immediately had the delivering doctor …
Continue reading “Bridget’s Story in honor of Rare Disease Day”
Read morePublished February 29, 2020 by NORD
I was diagnosed with primary immunodeficiency when I was four years old. With primary immunodeficiency, the assumption is that “it’s just an infection” or that it’s normal because “kids get …
Continue reading “Ashlee’s Story in honor of Rare Disease Day”
Read morePublished February 26, 2020 by NORD
This year, NORD has developed a brief video for Rare Disease Day featuring rare patients, caregivers and supporters sharing their thoughts on the importance of the day and relaying the …
Continue reading “NORD Debuts Rare Disease Day 2020 Video”
Read morePublished February 25, 2020 by NORD
Does anyone ever think that they may have a rare disease? Well, I for one definitely didn’t. Here I was, having my annual check-up with my very astute dermatologist, who …
Continue reading “Why Rare Disease Day Is Important to Me, by Chris Madden”
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