Since its inception in 2015, PatientWorthy.com has emerged as a beacon of hope, information, and support for the global rare disease community. From humble beginnings with its very first post, the platform has grown into a widely recognized media leader, transcending borders, breaking barriers, and touching lives in profound ways. As it celebrates nearly a decade of service, the achievements of PatientWorthy are not just measured in numbers, but in the stories, connections, and real-world impact it has made for patients, caregivers, and advocates alike.
A Global Platform for Rare Disease Voices
PatientWorthy.com was established with a singular vision: to amplify the voices of those affected by rare diseases. What started as a niche blog has blossomed into an international resource, boasting over 20,000 published articles since 2015. These articles cover a wide array of rare diseases, providing up-to-date news, patient stories, treatment breakthroughs, and advocacy updates.
Approximately 40% of Patient Worthy’s audience resides outside the United States, underscoring its global reach and relevance. The platform’s commitment to international engagement is further reflected in its partnerships with over 100 rare disease advocacy organizations worldwide. This collaborative spirit ensures that rare disease communities, regardless of geography, have access to vital information and support.
National and International Recognition
Patient Worthy’s reputation as a thought leader in the rare disease space is well-established. The site has garnered both national and international recognition, not only for its comprehensive content but also for its innovative approach to storytelling and advocacy. Its award-winning podcast, “Wait, How Do You Spell That?” has become a staple for rare disease patients, caregivers, and health professionals. The podcast explores the complexities of living with rare diseases, blending expert interviews, patient stories, and practical advice in an accessible format.
The team’s visibility is further evidenced by frequent participation in conferences around the world, both as attendees and as sought-after speakers and sponsors. Patient Worthy has also been a steadfast participant in Rare Disease Week every year since 2015, a flagship event hosted by the National Institutes of Health (NIH) in Washington, DC. Their ongoing presence at such events solidifies their role as key advocates and educators in the rare disease community.
Real-World Support: Stories of Impact
Beyond its digital presence, Patient Worthy is deeply committed to tangible, real-world support for rare disease patients and families. The organization’s hands-on approach has led to numerous patient support successes, each demonstrating the power of community, compassion, and resourcefulness.
- Making Dreams Come True
For a young patient with Tay Sachs disease, Patient Worthy helped arrange a dream trip to Disney World, providing not just a break from medical challenges but a treasured family memory. In another instance, they organized a day of honor for a Tay Sachs patient at Yankee Stadium, turning a lifelong sports dream into a reality.
- Advocacy on the World Stage
Patient Worthy’s advocacy extends far beyond the United States. In 2019, representatives spoke before the Parliament of the Czech Republic, sharing insights on rare disease patient advocacy and meeting with the Secretary of Health and his daughter, who lives with spinal muscular atrophy (SMA). This international engagement illustrates Patient Worthy’s commitment to shaping policy and awareness globally.
- Emergency and Ongoing Support
The organization’s assistance isn’t limited to special occasions. When a blind man lost his wife suddenly, leaving him without support, Patient Worthy mobilized volunteers to provide ongoing care, food, medication, and home health visits. They even arranged for a new cell phone equipped with accessibility features, helping him regain independence and connectivity.
- Supporting Children Across the Globe
Patient Worthy’s reach is truly global. When cancer left a young boy in Brazil bedbound, they provided him with an iPad to improve his quality of life. They facilitated enzyme replacement therapy for a child in a country where such treatment was previously inaccessible and connected healthcare professionals in Lebanon and Japan to ensure children received life-saving medications. In Bangladesh, they provided hearing aids to a boy with glycogen storage disease, and in the Philippines, they financially supported a family so their child with Maple Syrup Urine Disease could receive vital medicated formula, arranging regular delivery to a local store.
- Empowering Families and Individuals
The organization also supports grieving families and those striving for self-sufficiency. Patient Worthy assisted a mother who lost two sons to OTC deficiency in gaining her nursing license and securing employment, empowering her to rebuild her life. For a family displaced by war in Ukraine, Patient Worthy organized crowdfunding to ensure their daughter received necessary medical treatment despite the upheaval.
Collaboration and Community
Central to Patient Worthy’s mission is collaboration. By partnering with over 100 rare disease advocacy organizations, the platform helps unify the voices and efforts of diverse patient communities. These partnerships foster the sharing of resources, knowledge, and support networks, creating a collective force for awareness and change.
Looking Ahead: Continuing the Mission
As Patient Worthy approaches its tenth anniversary, its commitment to the rare disease community is stronger than ever. The team continues to expand its content library, reach new audiences, and innovate in the ways it supports patients and families. The focus remains on storytelling—giving rare disease patients a platform to be heard, understood, and supported—and on advocacy, ensuring that the unique needs of this community never go unnoticed.
The next decade holds promise for even greater impact. With advancements in digital health, telemedicine, and global advocacy, Patient Worthy is poised to remain at the forefront of rare disease news and support. Its legacy is already profound, but its greatest achievements may yet lie ahead.
