Scroll
To Top

February 29, 2020

TOPIC: Featured News, Advocacy, 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, 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: Featured News, Advocacy, 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

February 27, 2020

TOPIC: Advocacy, Get Involved, Rare Disease Day

Tik Tok Influencer Mark Anastasio Challenges Connecticut Students to Stripe Out Their Schools

Posted at February 2, 2020 08:10 am by Valaree DonFrancesco

Dance, lip-sync and comedy video creator Mark Anastasio spoke in a somewhat different tone in a recent Tik Tok video for his 6.3 million followers. The content of the video? Raising awareness for the rare disease community in memory of his teacher’s son, Tyler Cummings.

Mark also used the video to… Read More

February 26, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Patient Stories, Get Involved, Rare Disease Day

NORD Debuts Rare Disease Day 2020 Video

Posted at February 2, 2020 07:20 am by Valaree DonFrancesco

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 rallying cry, “Show Your Stripes!”

Show Your Stripes takes its cue from the zebra, mascot of the rare disease community, which is known for its distinctive… Read More