“I read every single paper about this one rare disease I was assigned to. I thought I knew everything about it and had a good understanding. On February 28, Rare Disease Day, our company [Alnylam Pharmaceuticals] brought in patients and their caregivers with that disease,” said 5th year pharmacy student Jennifer Shoskes. “Hearing them talk about their experience and the struggles they have, made me realize – I knew nothing about this. It was really eye opening for me.”
While on her co-op at Alnylam Pharmaceuticals, Shoskes was inspired – not only to learn more about many of the rare diseases in the United States, but to tie rare disease work into her pharmaceutical career path. With these passions, she also hoped to be able to raise more awareness about rare diseases and the experiences of patients of these diseases.
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, Shoskes put together a core group of 10 students to start RareNeu, Northeastern’s student chapter of NORD. This has become one of only four NORD student chapters in the country. With help from their faculty advisor, Professor and Department Chair of Chemistry and Chemical Biology Michael Pollastri, the organization is well underway and is holding their first meeting later this month.
“One of the overall main goals for our group is to raise awareness,” Shoskes said. “One of the main things about rare diseases is that people don’t know about them – and it’s not just about the disease, but to shed light on what patients and their caregivers go through.”
In addition to this, Shoskes said their 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.
“Our goal isn’t necessarily to focus on one specific disease at a time, but to create that mindset on how to approach rare diseases,” Shoskes said.
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. Shoskes hopes 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.
Shoskes encourages anyone interested – regardless of major – to join. “If you work in any health setting, it’s common that you’ll run into a patient with a rare disease. To be able to understand the struggle they’re going through and be able to create that mindset to approach them and know a little bit about what they’re going through, that is very unique as a healthcare professional,” she said.
Faculty advisor Professor Pollastri is looking forward to the start of this group.
“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,” he said. “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, and I’m thrilled that it’s being launched here at Northeastern.”