February 26, 2021
TOPIC: Patients & Members, Advocacy, Patient Stories, Rare Disease Day
Posted at February 2, 2021 02:41 pm by Valaree DonFrancesco
I am the parent of a four-year-old girl named Nola. She was diagnosed with distal 18q deletion at the age of 18 months. Caring for a child with a rare disease affects every aspect of daily life. I find myself having to be more attentive and always “on” when I am with Nola. My career had to… Read More
February 25, 2021
TOPIC: Featured News, Patients & Members, Advocacy, Rare Disease Day, #NORDintheNews
Posted at February 2, 2021 12:14 pm by Valaree DonFrancesco
The ALS Association’s podcast, Connecting ALS, interviewed NORD Director of Membership Debbie Drell for a special Rare Disease Day episode, streaming now. The conversation touched on the origins of Rare Disease Day, storytelling, NORD’s “Show Your Stripes” campaign, and how the organization’s patient advocacy work has continued during the pandemic.
February 24, 2021
TOPIC: Featured News, Patients & Members, Advocacy, Patient Stories, Rare Disease Day
Posted at February 2, 2021 11:25 am by Valaree DonFrancesco
This morning, a special Rare Disease Day segment of Behind the Mystery, the recurring rare disease series on Lifetime Television’s award-winning morning show The Balancing Act, aired at 7:30am ET. The impactful segment featured NORD’s Director of Strategic Planning, Lisa Sarfaty, sharing facts about rare disease and information on how to get involved with Rare Disease Day.
February 23, 2021
TOPIC: Press Releases, Featured News, Patients & Members, Advocacy, Industry
Posted at February 2, 2021 10:17 am by Valaree DonFrancesco
Washington, DC, February 23, 2021 — Today the National Organization for Rare Disorders (NORD®) announced this year’s Rare Impact Award honorees. These outstanding individuals, organizations and industry innovators will be honored for their exceptional work benefiting the rare disease community in a virtual event streaming on June 28, 2021 at 7:00pm ET. The Rare Impact Awards program is part… Read More
February 19, 2021
TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd
Posted at February 2, 2021 08:40 am by Valaree DonFrancesco
At the Head of the Herd is… Chandra Clark, Executive Director, VHL Alliance. Today she shares her passion for incorporating diversity, equity, and inclusion within the rare disease space.
Prior to joining VHL Alliance, how did you get exposure to diversity, equity and inclusion (DEI)? How do those experiences carry over to your work with the von Hippel-Lindau syndrome (VHL)… Read More