September 24, 2021
TOPIC: Uncategorized, Sticky Posts for Homepage
Rare Cancer Day 2021
Posted at September 9, 2021 11:51 am by Sean Roberts
TOPIC: Uncategorized, Sticky Posts for Homepage
TOPIC: Uncategorized
On January 22, NORD’s Rare Caregiver Respite Program was featured in an article by BioNews Service writer Mary Chapman detailing the program’s offerings. It has run in the following patient-focused newsletters to date:
The article can be read in its entirety
TOPIC: Uncategorized
At the Head of the Herd is… Lanie Etkind, Executive Director, Familial Dysautonomia Foundation
Lanie advocates for those affected by… familial dysautonomia (FD)
Lanie is located in… New York, NY
How Lanie got here… I first heard of this rare disorder when a friend’s son was born with it 14 years ago. I was merely a donor to the Foundation until I… Read More
TOPIC: Uncategorized
Patient Empowerment Network recently interviewed Rare Action Network Volunteer State Ambassador for Illinois Maria Bellefeuille on being both a rare disease patient and advocate. Maria will be speaking at this weekend’s Living Rare, Living Stronger NORD Patient and Family Forum on the “Long-term Survivor Panel: Tips, Tricks & Life Hacks for Living Your Best, Rare Life!” panel, which… Read More
TOPIC: Uncategorized
