Rare Disease Day 2025: The Role Of Collaboration In Advancing Rare Disease Treatments

Every year, Rare Disease Day is recognized on the last day of February, serving as a powerful reminder of the 300 million people worldwide who live with a rare disease. As we mark Rare Disease Day 2025, the global community comes together once again to raise awareness, drive advocacy, and push for continued progress in research, treatment, and care for those affected by these often-overlooked conditions.

One individual who brings a unique and deeply personal perspective to rare disease advocacy is Sharon King, Senior Lead: Advocacy at Aldevron. Through her work with the patient advocacy organization Taylor’s Tale, inspired by her late daughter Taylor’s journey with Batten disease, Sharon has been a tireless champion for rare disease communities. Now, in her professional role at Aldevron, she bridges the gap between patient advocacy and the biotech industry, demonstrating the critical role that collaboration plays in advancing research and developing innovative therapies.

As rare disease research continues to evolve, particularly with breakthroughs in gene therapy and precision medicine, the partnership between patient communities and biotech companies has never been more important. Patients and their families bring invaluable insights that help shape research priorities, clinical trial design, and regulatory pathways—ensuring that scientific advancements translate into real-world impact.

We spoke with Sharon King to hear her thoughts on the importance of these partnerships, the latest advancements in gene therapy, and how advocacy-driven collaboration can accelerate progress in the rare disease space. Here’s what she had to say.