Jan. 27, 2020
Posted by Valaree DonFrancesco
- Tell us a little bit about yourself! Where are you from?
I’m Allison Herrity and I’m from Arlington, Virginia!
- Where do you attend school and what are you studying?
I’m a senior at the George Washington University studying public health. I’ll also be staying at GW for an extra year after I graduate to complete an MPH in health policy.
- Where did your interest in rare disease advocacy come from?
About two years ago, I was diagnosed with my rare disease, and I was looking for a way to get involved with some sort of community after such a long diagnostic odyssey. I also have a sister with a rare disease, and her journey has pushed me toward advocacy as well.
- In what ways have you been involved with NORD?
I was a policy intern then a policy fellow at NORD for a year in 2018-2019. Working at NORD was such a great experience, and I met some of my favorite people while on the job. I clearly can’t stay away – since leaving NORD in my capacity as policy fellow, I’ve taken on new roles as a Community Engagement Liaison for the Virginia Rare Action Network and now as a student chapter leader!
- Why did Rare GW join Students for Rare?
RARE GW was a pre-established student organization at GW, but we’re still really new! We were hoping to gain access to some of the amazing resources NORD has to offer and open up opportunities like attending Summit and Living Rare Living Stronger to our student leaders.
- What do you hope to do in your career relating to rare disease?
I would love to work on rare disease policy in some capacity. I really loved some of the work I did at NORD pertaining to drug pricing and the orphan drug act, so that’s definitely on my radar.
- What do you see as the biggest challenge for rare disease patients?
I think it varies a lot disease to disease, but for me and my sister both it was actually getting a diagnosis. Sometimes, when your condition is rare, doctors don’t even learn about it in their medical education. When I was searching for a surgeon to perform my MALS surgery I met with several vascular surgeons who had never even heard of MALS, nonetheless performed the surgery to fix it. Finding a specialist to take on the task of diagnosing and treating you can be a huge challenge.
- What would you say to other students who are interested in rare diseases?
Take advantage of all NORD has to offer! The team at NORD wants to help you and see you succeed, and I highly recommend chatting with them about the various career paths available to you in the rare disease space.