By Katie Chung
Every February, advocates and organizations from the rare diseases community meet in Washington, D.C., for Rare Disease Week. EveryLife Foundation hosts the conference that prepares attendees to meet with lawmakers and advocate for policies that impact rare diseases. This year’s Rare Disease Week resulted in 357 congressional meetings attended by more than 700 rare disease advocates and 165 patient organizations. Among attendees was then second-year Vanderbilt Master of Genetic Counseling (MGC) student, now 2026 graduate, Grace Branger, who brought together both her passion for amplifying patient voices and knowledge from MGC coursework to act as an advocate on Capitol Hill.
Can you tell me a little about yourself and your background?
My journey to genetic counseling has been an interesting one, and one that’s been really fulfilling. I first got introduced to the profession kind of as a kid. My mom had breast cancer when she was pretty young, and so paired with my family history of some cancers, that kind of raised red flags for her doctors. She ended up doing genetic testing and was found to have a BRCA1 mutation. Ever since then, I’d been curious if this could be a career for me.
I got really interested in rare disease in college when I was doing a minor in disability rights and services. As part of that certificate program, I worked as a respite care provider for kids with disabilities, so I got to see a lot of different genetic conditions. I think through that experience, I got really interested in the lived experience of rare disease.
What is Rare Disease Week on Capitol Hill?
Rare Disease Week on Capitol Hill is run through an organization called EveryLife Foundation for Rare Diseases. It’s a huge three-day event in D.C. that brings families and advocates together to advocate for disability policy.
The first day was learning about how to tell your story. The second day was learning more about the policies themselves. EveryLife Foundation chose four main policies to dive deep into, but anyone could bring policies that they were uniquely passionate about. The last day of the event, we went to our senators’ and representatives’ offices and advocated in small groups for these different policies and legislation that we were bringing forward.
How did you get involved?
I first heard of it in a meeting with a group of genetic counselors that do more advocacy and nonprofit genetic counseling, more non-traditional roles. I emailed my program director and asked what she thought about it, and she said it had been a great opportunity for students in the past, so she really encouraged me to seek it out. Then I learned there was a travel scholarship that you could apply for. I applied andI was awarded that scholarship, so it made going there much easier.
What was the process like preparing to advocate?
After learning more about the policies, we met in our different state groups. I was able to meet with all of the advocates that came from Tennessee, some who lived in Nashville, some who had gotten care at Vanderbilt, and some whose geneticist I’ve worked with in clinic. It was really cool to meet up with them and hear more about their experiences. In those small group meetings the day before we advocated, we really tried to combine our stories and make a fluid, compelling plan for how to go in there, what to say, and how to transition from each other’s stories.
I knew that the Access to Genetic Counselor Services Act was something I was passionate about, but I also wanted to give the families the first shot at sharing their stories, because I knew that would be really impactful. So I kind of went into those meetings wanting to hear what everyone else had to say and see how it fit into the agenda we made.
We planned on one family sharing their personal story; they were advocating for increased newborn screening because their child had a metabolic disorder that wouldn’t have been caught in Tennessee. Then they passed it to me to talk about my experience in grad school and the act I was advocating for, and then we passed it on to another family to talk more about caregiving. It was cool to think about the best way to share these stories together as a fluid story that policymakers and their staff members could take back and continue to advocate for.
What was it like actually meeting with policymakers?
It was exciting! I was nervous, I’d never done a large-scale advocacy event like this, and I’d never met with a policymaker before. But I was really passionate about what I was there to talk about. It was helpful to know that the staff members we were meeting with had chosen to be in healthcare, and a lot of them had personal connections to it. It was exciting to think about how we could share our stories and make them personal so that it would resonate with them most.
It was a good way to incorporate everything I’ve learned into one experience. It was definitely nerve-wracking, and it was very vulnerable sharing those stories, but it was very rewarding. I think all of us in our small groups got really close throughout the experience.
Did this experience change how you think about advocacy or policy?
As a student, I’ve been so focused on smaller, more institutional-level policies and protocols. But I think a lot of it does start at the Capitol, and a lot of it starts at the state level too. There’s a lot of things we can’t do without higher level support.
Now I’m definitely more motivated to advocate on a state level and a national level, and think more about how that affects my day-to-day life as a future practitioner. I hadn’t really thought about it trickling down in that way for patient care before, but it really makes all the difference.
How has this experience influenced your future goals?
I’m still very interested in rare diseases. For my thesis, I’ve been working on a disease concept model for Okur-Chung Neurodevelopmental Syndrome, which requires doing interviews with caregivers to learn more about the lived experience of the condition and the psychosocial impacts on both the individual and their family members.
I’m very interested in pediatric genetic counseling and my most focused interest is amplifying the voices of individuals affected by rare diseases. Everyone’s story is very unique. Even families who have the same condition, their stories and experiences are going to be vastly different. I’m excited to be able to sit down with them and really give attention to their story and help their story inform how they want to move forward with treatment or testing. National Rare Disease Week gave me great experience in advocacy work
What would you say to other students considering this experience?
I would definitely encourage anyone to do it if they’re interested. It was a great experience to supplement what I’ve been learning in class. Over the summer we took a public health course, so I was able to use some of that information as well as my passion for working with patients. Don’t let inexperience be a barrier, because you learn a lot by doing it, and it’s really rewarding.