Our Spring Interns did not disappoint in bringing awareness and advocacy for rare diseases in Wisconsin! We want to congratulate Kaitlyn and Sarah on their college graduation and wish them the best as they continue their careers. Continue below to read their final thoughts on their internship with WI Rare.
“My time as an advocacy intern at the Wisconsin Rare Disease Alliance has been an incredibly enriching and eye-opening experience. I’ve learned so much about the world of rare diseases and the crucial role advocacy plays in driving change. One of the highlights was understanding the legislative process and learning how to effectively testify for a bill, which was both challenging and rewarding. Connecting with families affected by rare diseases has been truly heartwarming and one of my favorite parts of the internship. Their stories and resilience have deeply inspired me. Participating in Rare Disease Day was especially impactful, highlighting the power of community and the importance of raising awareness. This experience has not only educated me but also strengthened my passion for making a difference in the rare disease community.” – Sarah
Next steps for Sarah: Continuing her graduate school education at University of Wisconsin. Her future will undoubtably include working with rare disease families!
“During my time as an intern at the Wisconsin Rare Disease Alliance (WRDA), I had the opportunity to support their mission of improving diagnosis, treatment, and care for those with rare diseases. A key part of my role involved reaching out to legislators, especially during Rare Disease Day. I made visits to the state capital, distributing educational materials about rare diseases and newborn screenings. This hands-on approach to advocacy underscored the significance of personal involvement in policy-making.
In addition, I had the chance to interview individuals and families affected by rare diseases. These conversations were transformed into articles for the WI Rare website, aiming to educate the public and build a sense of community among those dealing with rare conditions. A particularly memorable moment was when I wrote about a young boy living with Prader-Willi Syndrome and later had the chance to meet him. It’s easy to lose sight of the bigger picture when you’re immersed in work, but meeting him served as a poignant reminder of why this work matters so much.
Overall, my time at WRDA was an invaluable introduction to the world of rare disease advocacy, teaching me the power of advocacy and personal narratives in shaping healthcare policy. I will carry the insights and experiences gained during my time at WRDA into my future career endeavors.” – Kaitlyn
Next steps for Kaitlyn: Relocating to North Carolina to work for a pharmaceutical company who manufactures rare disease therapies.
