In honor of Rare Disease Day, we’re sharing a behind-the-scenes look at what inspires RDMD staff members to push for advancements in rare disease research.
You may be familiar with our co-founder Onno’s story (if not you can watch him talk about it in his TedTalk!), but many of the hard-working folks at RDMD have a strong connection to our mission and the rare disease community.
What brought you to work on advancing rare disease research? When I was 13, I became friends with Aly. Almost immediately, we were inseparable. I spent tons of time with her family both during the week and on weekends. I even went on family vacations with them. Aly and I were like sisters. After college, we both moved to California. It was far from our home town in Pennsylvania, but we were both starry eyed and hopeful about the future. Last year, Aly had to go to the hospital for acute onset of symptoms: numbness in her extremities, inability to walk, trouble speaking and seizures. She was diagnosed with an extreme attack of Guillain-Barré Syndrome. I was close by, but I felt totally helpless. I wished there was anything I could do to bring her comfort or offer support. I didn’t know how. I love RDMD’s mission and care about advancing rare disease research because it gives me hope that treatments can be found for diseases like GBS. It gives me hope that someday our work will allow us to bring comfort to many people affected by rare disease.
Song you listen to when you need a boost: I Feel Alright (Mura Masa Remix) by Bonzai, Mura Masa
Describe what you do at RDMD in one sentence: I write software to build the platform we use to connect patients with their medical data, research opportunities and updates.
What brought you to work on advancing rare disease research? I had a stroke when I was 29 and working on Capitol Hill. I learned it was caused by a rare autoimmune disease. Since then, I have met rare disease patients and families from around the world who are doing whatever they can to drive research, support drug development and advocate access to treatments once approved. I want to do whatever I can for patients waiting for safe and effective new treatments.
Song you listen to when you need a boost: ‘Roar’ by Katy Perry is my rare disease rally song
Describe what you do at RDMD in one sentence: I work with patient advocacy organizations interested in utilizing the RDMD platform to accelerate the development of treatments for rare diseases.
Why are you motivated by RDMD’s mission to accelerate rare disease research? RDMD is tackling this gap in the rare community that no else is tackling! This completely drew me in and I love being a part of this challenge. My number one motivator is to help give our patients an opportunity for something they never thought was possible. I am so inspired by the stories of our RDMD community. Even though I am behind the scenes working on medical records, I still feel very connected to our patients and our mission. Everyday, our operations and abstraction teams advocate for our patients by making sure that their data is processed at the highest quality. It’s incredibly exciting and I feel so blessed to be a part of this company and mission!
Song you listen to when you need a boost: Go Your Own Way by Fleetwood Mac
Describe what you do at RDMD in one sentence: As the Clinical Information Associate in Patient Operations, I am processing our patients’ medical records and data directly into our platform, as well as collaborating with other team members on ways to improve our system.
What brought you to work on advancing rare disease research? My interest in rare disease research originated from the challenges that my father and family faced against a rare prostate cancer. Soon after diagnosis, he qualified for an experimental treatment that fortunately led to remission. That was the first time that I personally experienced the impact of research. That experience led me to the SMA Foundation, where I conducted translational and clinical research to speed up drug development for spinal muscular atrophy, which is a rare, neuromuscular condition that affects children. There, I learned about the unique challenges in rare disease drug development and opportunities to use technology to drive research. Shortly before leaving the foundation, we received news from my dad’s oncologist. After living 10 years in remission, the cancer was back. Despite advances in modern technology and a dozen rounds of treatment, the outcome ended differently this time around. I’m forever grateful for the clinicians, researchers, and caregivers who supported my father and family along the way. Having gone through this journey, I empathize with our RDMD patients and families, who continue to fight like my family did, day after day. It’s their spirit and my father’s memory that keep me motivated to serve our mission at RDMD.
Song you listen to when you need a boost: Des’ree - You Gotta Be
Describe what you do at RDMD in one sentence: Work with our patients, partners, and team to figure out what products to build to support our mission to empower patients and communities to accelerate the development of treatments for rare diseases.
What brought you to work on advancing rare disease research? My youngest sister was diagnosed with a rare neurodevelopmental disease in early childhood. My family’s experience inspired me to pursue a career in science so I could research new therapies for patients with few treatment options. I first trained as a molecular biologist, where I researched ways to prevent breast cancer metastasis. This work made me want to get more directly involved in patient care and I decided to become a genetic counselor. During my clinical training, I started working in rare disease clinical research and everything really came full circle for me - I love being able to work on studies that help the community better understand how a disease progresses over time and how to design clinical trials. I joined RDMD because my work here allows me to contribute to rare disease research and help advance therapies that will make a difference in the lives of families like mine.
Song you listen to when you need a boost: “Shake it Off” by Taylor Swift
Describe what you do at RDMD in one sentence: I manage our portfolio of research projects with researchers, patient groups and industry, which involves designing research studies, analyzing data and writing up study results to share with the community.
What brought you to work on advancing rare disease research? In all my lives in genetics research, biotech and consumer healthcare, I have always wanted to narrow the gap between patients and drug companies. It didn’t make sense to me that these two groups, whose interests are most aligned, often interacted very little with each other. In rare disease, closing this gap is especially critical. When I met my co-founder Onno back in 2017, I was inspired by his unstoppable willpower as an entrepreneur and rare disease patient. We started learning about the rare disease world together, without an idea or solution in mind. Eventually, neither of us could stop thinking about the problem. We had so many ideas for ways we could improve the system. Almost immediately, I fell in love with the people in rare. Others have probably heard me say that the people I’ve met in and around rare disease are a special group: the patients, caregivers, families, patient groups, researchers and drug companies! This is a group of ambitious, mission-driven people who don’t back down from a challenge. Now, I am inspired every day to fundamentally change how drug development is conducted—alongside some of the most courageous people I know.
Song you listen to when you need a boost: September - Earth Wind and Fire
Describe what you do at RDMD in one sentence: I’m the CEO and co-founder of RDMD, and I spend most of my time driving strategy and operations, meeting with all our different stakeholders, and supporting the team wherever I can.
If you are a rare disease patient or caregiver and are interested in contributing to research, learn more at rdmd.com.