The National Organization for Rare Disorders (NORD) is a non-profit organization that works to advocate for and educate about the many rare diseases that most of the country knows nothing about. There are over 7,000 characterized rare diseases, and the number continues to grow. One in 10 Americans afflicted with a rare disease, and of those, 50 percent are in pediatrics. NORD works to raise awareness and support for the many members of our population who make up these numbers.
Last spring, a core group of 10 students came together to start RareNeu, Northeastern’s student chapter of NORD. This has become one of only four NORD student chapters in the country. One of the overall main goals is to raise awareness – and it’s not just about the disease, but to shed light on what patients and their caregivers go through. In addition, other goals will be to raise awareness about the policies regarding rare diseases, as well as to give students opportunities to become involved in any aspect of rare diseases. This could include internships at NORD, the chance to become published authors on rare diseases, and more.
Throughout the year, RareNeu is planning on holding philanthropic events, having letter-writing campaigns for local policy changes around rare diseases, and bringing in industry members, patients, caregivers, and head of patient organizations to educate their members and all of Northeastern about rare diseases. They hope their biggest event will be on Rare Disease Day, where they’ll bring Northeastern students to the Massachusetts State House to listen to patient speakers and industry representatives discuss policies with government officials.
NORD represents an opportunity for Northeastern students to learn about rare diseases, so that they can become effective patient advocates, researchers in the field, and help influence discussions in the public sphere. This is not at all limited to students interested in science or medicine – for example, the field can also benefit from those who are interested in public health or in business models around rare diseases. It’s an exciting initiative being launched here at Northeastern.