Advait Wattal’s Journey to Make a Difference

Advait Wattal, a student advocate and NORD State Ambassador, shares how his commitment to public service sparked meaningful action in support of the rare disease community. His story shows the power of youth-driven advocacy and the impact one person can make.

Throughout my high school career, I engaged in public service and policy with the hope of one day working in health care policy. In addition to serving as student council president and captain of the varsity tennis team, I teamed up with a few friends to support the rare disease community through fundraising by starting a nonprofit, Aware4Rare. Together, we organized a 50-mile relay that raised $2,850 for the National Organization for Rare Disorders (NORD®). Our event was highlighted by a local paper, the Moorestown Sun, and I had the opportunity to speak at my town’s Rotary Club about the importance of supporting those affected by rare diseases. My firsthand exposure to a person living with a rare disease reminded me of the unique challenges that each individual faces and motivated me to make a difference in the lives of those affected by conditions that often go unnoticed and underfunded.

This fall, I’ll be attending the University of Pennsylvania, where I hope to continue research I began during an internship at Penn’s Genetic Diagnostic Laboratory last summer. My research focused on reclassifying genetic variants in Hereditary Hemorrhagic Telangiectasia (HHT), a rare disorder, by applying updated clinical guidelines. By analyzing older patient data, I was able to help clarify whether certain genetic changes were likely benign or pathogenic—information that could now be shared with patients to guide more accurate diagnoses and treatment decisions. Additionally, my independent research paper, “Rare Diseases and their Unique Challenges,” about the complex challenges faced by patients, doctors, and researchers in the rare disease community, including delayed diagnoses, limited treatment options, and lack of funding—has been accepted for publication in the Journal of Student Research.

I was also recently invited to join NORD’s State Ambassador Program. As a volunteer Ambassador, I’ll continue raising awareness and funds for the rare disease community and look forward to advocating for legislative change that improves the healthcare ecosystem for individuals affected by rare diseases.

If you are interested in volunteering with NORD to make a difference for those impacted by rare diseases, please submit this form to get started!