Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine
About you
Empowering rare diseases and chronic illness warriors to connect, share, learn and heal together.
Your biggest motivation
Creating a better environment for people who are in the same situation as when I was diagnosed with hypophosphatasia is what drives me the most. Like many other members of the rare disease community, my mom and I had a difficult time getting a diagnosis. I’ve heard several accounts of the same difficult process, which is very agonizing on its own. My motivation has been greatly increased by the thought that Rare Guru could make the diagnosis process easier. Developing more resources to provide the rare disease community with information and a support network has motivated me to develop and launch Rare Guru.
Your greatest achievement
My proudest accomplishment is being selected (at 14) as the youngest of the 15 TechWomen Rising Accelerators for Women-Led Tech Startups for the Tampa Bay Wave in 2021. It allowed me to learn early tech industry knowledge from other accomplished women who have founded their businesses. Being able to better myself as an entrepreneur what I can do to better Rare Guru, and how I can reach more people. It taught me so much; getting that opportunity was a huge achievement and one of the best things I’ve ever gotten to do.
What’s next to strive for?
The next goal I have in mind is finishing my research for my high school capstone project on how technology can help rare disease patients. I want to gain more of an understanding of the rare disease community as a whole on a deeper level than I have before. Creating a way to connect other patients, especially teens, to find out more about the problems they face and creating a community so we can learn from each other. Doing so will allow me to dig into problems that the rare disease community faces and develop possible solutions, through the action project part of my capstone.
Advice to other up-and-coming advocates
I have one piece of advice for aspiring advocates. Regardless of your age, your voice will be heard. Our generation has a significant influence on the world around us, particularly with social media and the abundance of paths available for advocacy. There are a lot of approaches that allow you to talk about your beliefs and share your story. You may accomplish this using an abundance of creative ways that suit your style; it’s a gift that makes advocating a lot of fun! You have the whole world at your fingertips and because of this your journey to advocacy especially for the rare disease community will reach so many people. So use this resource to your advantage.
The tide will have turned for the rare disease community when...
There is increased awareness and understanding of rare diseases in the medical community, leading to improved diagnosis, treatment options, and support systems.
Socials
Instagram: @rareguru
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