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January 26, 2021

TOPIC: Patient Stories, Rare Disease Day

Bradley’s Story in Honor of Rare Disease Day

Posted at January 1, 2021 09:26 am by Valaree DonFrancesco

My son Bradley was diagnosed with infantile myofibromatosis when he was four months old. We noticed he had a large mass on his forearm and immediately called the pediatrician. They sent us to radiology to have an ultrasound done and before we knew it, we were headed to the medical center in Houston, Texas to meet an oncologist…. Read More

January 25, 2021

TOPIC: Patient Stories, Rare Disease Day

Olivia’s Story in Honor of Rare Disease Day

Posted at January 1, 2021 09:26 am by Valaree DonFrancesco

My oldest daughter, Olivia, was recently diagnosed with Barakat syndrome (Gata 3 or HDR syndrome). Though she is eleven now, we have been battling the kidney disease part since birth and hearing loss since age five. As of now, she does not exhibit any hypoparathyroidism symptoms yet. The biggest stress on our… Read More

January 24, 2021

TOPIC: Patient Stories, Rare Disease Day

Tristan’s Story in Honor of Rare Disease Day

Posted at January 1, 2021 05:26 pm by Valaree DonFrancesco

You are featured in the 2021 Rare Disease Day international campaign as a patient “hero” from the United States. Why is Rare Disease Day important to you?

I‘m so honored to be a part of this amazing campaign. Rare Disease Day is important to me because it’s a day when a spotlight is focused on… Read More

March 13, 2020

TOPIC: Featured News, Advocacy, Events, Rare Disease Day

Rare Disease Day 2020 Advocacy Events Recap

Posted at March 3, 2020 02:31 pm by Valaree DonFrancesco

In 2009, NORD was invited to join the official Rare Disease Day campaign, led internationally by EURODIS. Since then, NORD has been the official US sponsor of Rare Disease Day, driving the annual campaign in the states, hosting advocacy events across the country and bringing the rare disease community together to promote awareness and help improve the… Read More

March 11, 2020

TOPIC: Patients & Members, Advocacy, Events, Rare Disease Day

Rare Disease Day 2020 and the Mission I Choose to Accept, by Debbie Drell, Director of Membership for NORD

Posted at March 3, 2020 08:14 am by Valaree DonFrancesco

If you or someone you love is diagnosed with a rare disease, you might find yourself on a very quick learning curve about the disease (or about the lack of information on the disease, or trying to even get to an accurate diagnosis!). The number one priority for me after my sister was diagnosed with a rare,… Read More