It’s fitting that South by Southwest (SXSW), the Austin-based event celebrating the convergence of tech, film, music, education, and culture, takes place during International Women’s Month. After all, during a panel discussion with the Chan Zuckerberg Initiative (CZI)’s Rare As One Network, the impact women can make when they band their knowledge, talent, and dedication together was on full display.

While CZI works to fund and advance medical research for all diseases, it has a special focus on rare diseases, many of which are overlooked, despite affecting over 400 million people worldwide. This gap in attention is what inspired CZI to launch its Rare As One Network. Spearheaded by Tania Simoncelli, CZI Vice President of Science in Society, Rare As One provides funding opportunities to support patient-led research into rare diseases. 

Many of these research groups were founded by patients or parents of patients, and a significant number are led by women — women who, when they couldn’t find support within the traditional medical community, chose to take matters into their own hands. 

During a panel discussion at SXSW, Katie spoke with Simoncelli, Christina Miyake, MD, and director of the Genetics Arrhythmia Program at the Baylor College of Medicine, and two women whose rare disease organizations are supported by the Rare As One initiative: Tara Zier, who was diagnosed with Stiff Person Syndrome in 2017, and Susan Dando, whose daughter Carmen lives with a rare genetic condition known as Smith-Kingsmore syndrome.

What sets the women of Rare As One apart is their commitment to self-advocacy: With support and guidance from CZI, they’ve taken control of their own health — and that of their loved ones — by raising awareness, funding research, and driving change. Their stories serve as a powerful reminder of the strength that comes from speaking up for one’s health, and the profound impact that such advocacy can have. 

In a world where women’s voices have too often been overlooked in medical spaces, these women are proving that advocating for yourself can shift the conversation — and help shape the future of healthcare.

For more, listen to Next Question with Katie Couric.