Written by Rohan Narayanan on November 1, 2022
Last month, more than 830 enthusiastic attendees gathered in-person (and many more virtually) for the 2022 NORD Rare Diseases and Orphan Products Breakthrough Summit to address and take action on the opportunities and challenges facing the rare disease community. Here are a few highlights:
FDA Commissioner Presents Keynote Address
FDA Commissioner Robert… Read More
Written by Rohan Narayanan on October 13, 2022
New initiative seeks to identify gaps experienced by patients and caregivers in underrepresented communities along their rare disease diagnosis and treatment journey
Washington, DC, October 13, 2022— Today, the Rare Disease Diversity Coalition (RDDC), the nation’s leading voice for alleviating the disproportionate burden of rare diseases on communities of color, and… Read More
Written by Rohan Narayanan on March 3, 2022
NORD Releases New Toolkit to Inform and Guide Patient Advocacy Groups to Improve and Prioritize Equity and Accessibility in the Rare Disease Community
Washington, DC,… Read More
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