Written by Maia Craig on January 12, 2022
NORD’s Rare Cancer Coalition (RCC) worked hard in 2021 to raise awareness for rare cancers and tackle issues that patients and caregivers face, such as access to care, treatments, and research.
At the start of 2021, NORD and our RCC members partnered with Read More
Written by Maia Craig on December 6, 2021
Mark Laabs is the Founder and Chairman of the Rare Cancer Research Foundation (RCRF). He shares a passion for driving research infrastructure with diversity, equity, and inclusion for rare cancer patients.
What motivated you to start RCRF?
I am a rare cancer survivor, and I was diagnosed with… Read More
Written by Rohan Narayanan on August 27, 2021
August 27, 2021 – Registration is now open for the NORD Rare Diseases and Orphan Products Breakthrough Summit®. The NORD Summit, one of the largest global events in rare disease, brings together experts and leaders from patient advocacy groups, government, industry, and academia to discuss the current and critical topics in rare… Read More
Written by Valaree DonFrancesco on February 19, 2021
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… Read More
Written by Valaree DonFrancesco on October 9, 2020
At the Head of the Herd is… Jennifer Canvasser, Founder and Director, Necrotizing Enterocolitis (NEC) Society
Jennifer advocates for those affected by… necrotizing enterocolitis (NEC)
Jennifer is located in… Davis, California
Jennifer most frequently checks her… Twitter page
How Jennifer got here… My son Micah developed NEC when he was six weeks old…. Read More