In the vast world of podcasts, “Wait, How Do You Spell That?” stands out as a beacon for patients, families, and advocates navigating the complex, often isolating journey of rare diseases. The podcast began during Rare Disease Week in 2020 on Capitol Hill where researchers and patients came together from all over the nation to share their stories and petition their representatives. Two young and passionate Patient Worthy staff members, both with diagnosed rare conditions themselves, found a quiet-ish corner to interview attendees about what was foremost on their minds. It has grown from a grassroots effort into a widely recognized resource, offering another platform to educate, advocate and empathize.
To listen to the first ever episode of “Wait, How Do You Spell That” titled “Share Your Story! But Only if You Want To.” click here.
The podcast’s title, a playful nod to the frequent confusion and complexity surrounding rare disease names – try on Mucopolysaccharidosis or Lymphangioleiomyomatosis for size! It embodies our mission: to demystify, humanize, and bring clarity to rare and often misunderstood conditions and to highlight those who are working to find therapies and cures.
Launched with the goal of amplifying voices typically left out of mainstream medical conversations, the podcast quickly found an audience among patients, caregivers, healthcare professionals, and researchers. Each episode features in-depth interviews with individuals living with rare diseases, family members, clinicians, scientists, and leaders from advocacy organizations.
Content and Format
The podcast’s format is both accessible and personal. Episodes typically range from 30 minutes to an hour, striking a balance between in-depth exploration and approachable listening. The conversations delve into topics such as diagnosis journeys, navigating healthcare systems, the power of patient advocacy, and the latest research breakthroughs.
A hallmark of the show is its commitment to looking for new frontiers that offer hope – new ways to do clinical trials, new technology from wearables to AI data analytics, new uses for already approved therapies, as well as genetic and genomic advances ranging from pre-implantation genetic testing to gene therapy and gut microbe analysis. Good ideas come from across the globe, and across the rare disease landscape, at times emerging from a single patient who has become a citizen scientist, to professors in academic institutions. The podcast has featured leading voices in rare disease research and advocacy, including representatives from nonprofit organizations, biotech innovators, and policy experts highlighting the interconnectedness of research, policy, and personal advocacy.
Accomplishments and Impact
Since its launch, “Wait, How Do You Spell That?” has published dozens of episodes, each shining a light on a different rare condition or advocacy effort. The podcast’s archive is a treasure trove of insights, chronicling the lived experiences of those affected by diseases that are often overlooked by the broader medical community.
In 2021 the podcast, then hosted by Colby Rogers, won the prestigious Pharma Choice Unbranded Silver award presented by PM360 as part of their Annual PM360 Pharma Choice Awards. PM360 created the Pharma Choice Awards to recognize the year’s most outstanding creative campaigns and marketing initiatives in the life sciences industry, as chosen by votes from industry professionals.
Many guests have credited the show with giving them a platform to share their stories, reach new audiences, and connect with others facing similar challenges. This has helped foster a sense of community and belonging among listeners who may otherwise feel isolated by their rare disease journeys.
Community Engagement and Reach
The podcast’s reach extends across the globe, with listeners tuning in from North America, Europe, Asia, and beyond. Its accessible format and universal themes have made it relevant to a wide spectrum of rare disease experiences, regardless of geography or language barriers. The show’s presence on Podbean and other podcast platforms has made it easy for listeners to access episodes on-demand, whether at home, in the hospital, or on the go. Social media channels and an online community further amplify the podcast’s reach and foster ongoing dialogue among listeners.
The podcast has also participated in rare disease conferences, awareness campaigns, and collaborative projects with advocacy organizations. These partnerships have helped expand its influence and connect listeners to additional resources and support networks.
Looking Forward
As “Wait, How Do You Spell That?” continues to grow, its mission remains steadfast: to inform, empower, and unite the rare disease community. Future plans include expanding the podcast’s library to cover even more conditions, increasing accessibility through transcripts, and deepening partnerships with research and advocacy organizations.
“Wait, How Do You Spell That?” is more than a podcast—it is a testament to the power of storytelling, community, and advocacy in the fight against rare diseases.
