By Eric W.
“Please don’t forget about me” were some of the last words a leprosy patient told me during my most recent trip to Ecuador.
I was in my early twenties and exploring career interests, which found me working with a nun from Brooklyn who had built a hospital for people affected by leprosy. My experiences with these patients drove me to understand how different players in healthcare can improve access to healthcare innovation for traditionally neglected populations such as people with rare diseases. These patients would launch my career in public health and later in the pharmaceutical and medical device industries. A decade later, I am now a third-year medical student hoping to add patient care to my toolbox.
During medical school, students are inundated with information and opportunities; it is common to describe this phase as “drinking from a fire hose” as we are taught about many rare and common diseases and disorders. I was fortunate that a senior classmate invited me to join our university’s NORD Students for Rare chapter. Our student chapter leaned on our skills as students and in two years accomplished the following:
- We published two peer-reviewed articles: one highlighting opportunities for rare disease advocacy in medical education, policy, and innovation and another discussing incentives for rare disease drug development.
- We implemented medical education reform at our university to include rare disease patient panels so that medical students can learn about the healthcare journey of rare disease patients.
- We hosted multi-disciplinary and cross-industry events for our community to learn about rare diseases and the different players that impact patient access to care.
- We supported NORD at the annual Rare Diseases and Orphan Products Breakthrough Summit and the Living Rare, Living Stronger Patient and Family Forum, including designing and facilitating a breakthrough session on advocacy.
- We are conducting research studies on medical education reform to improve how medical schools teach about rare diseases.
We are deeply humbled and grateful to all the patients who have reached out to us and participated in our work.
Finally, I want to talk about the annual NORD Breakthrough Summit in DC; it is one opportunity that makes NORD unique. The NORD Summit brings together all players in healthcare to network, share, and inspire each other. Federal government agencies (FDA and CMS), pharmaceutical and medical device companies, patient advocacy organizations, hospitals, and universities all regularly attend the conference. And everyone understands how tight knit the rare disease community is. It is a meeting unlike any I have attended in the past and is one of the best places to learn about current challenges and the future of rare diseases.
I am not a rare disease patient. However, I regularly think about my early rare disease patients and hold their stories close to my heart. What I hope you take away from my story is that anyone can bear witness to the struggle of people affected by rare diseases, and if you are so moved to volunteer, you can use any of your talents to contribute to the rare disease community. Personally, volunteering with NORD enables me to tap into my creativity, stay in touch with patients and families I meet along the way, and develop personally and professionally. It helps me continue my personal mission that every patient deserves not to be forgotten, no matter how challenging or rare their situation.
It is a joy to work with NORD. NORD has been critical in helping me stay engaged despite a busy medical school schedule. If you want to help improve the lives of people impacted by rare diseases, please consider engaging with NORD’s plentiful resources and opportunities. Your time volunteering can help the community in ways that may surprise you.
Want to learn how to volunteer with NORD? Attend our upcoming webinar on Thursday, April 25, 2024 at 7:00PM ET! Register at https://bit.ly/4aFwQhq.
You can also sign up to volunteer with NORD today at https://rarediseases.org/volunteer-application/.
