March 20, 2020
TOPIC: Featured News, Head of the Herd, Patient Stories, Patients & Members
Head of the Herd: Michele Sloan, Foundation to Fight H-abc
Posted at March 3, 2020 07:59 am by Laura Mullen
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 page
March 6, 2020
TOPIC: Advocacy, Featured News, Head of the Herd, Patient Stories, Patients & Members
Head of the Herd: Akiva Zablocki, The Hyper IgM Foundation
Posted at March 3, 2020 07:59 am by Laura Mullen
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 is located in… New York, NY
How Akiva got here…
In 2013, my son was… Read More
February 29, 2020
TOPIC: Advocacy, Featured News, Patient Stories, Rare Disease Day
Savannah’s Story in honor of Rare Disease Day
Posted at February 2, 2020 03:00 pm by Valaree DonFrancesco
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 in the thick of my second one (a relapse), and was officially diagnosed in October with NMO.
NMO… Read More
February 29, 2020
TOPIC: Advocacy, Featured News, Patient Stories, Rare Disease Day
Bridget’s Story in honor of Rare Disease Day
Posted at February 2, 2020 01:00 pm by Valaree DonFrancesco
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 puzzled. I was then rushed to a different hospital, four hours away, where there were specialists that could figure… Read More
February 29, 2020
TOPIC: Advocacy, Featured News, Patient Stories, Rare Disease Day
Ashlee’s Story in honor of Rare Disease Day
Posted at February 2, 2020 10:00 am by Valaree DonFrancesco
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 sick.” The problem was that I was never getting better and was fighting for my life every time I was… Read More
