Journeys of the Heart: A 25th Anniversary Celebration of Community and Connection

Last Tuesday evening in San Francisco, something remarkable unfolded. Against the backdrop of the city's skyline, rare disease families, researchers, advocates and industry leaders gathered for "Journeys of the Heart," our Global Impact Awards and 25th Anniversary Celebration.

This wasn't just another fundraising gala. It was a milestone moment that captured 25 years of growth, connection and unwavering commitment to making rare disease caregiving visible, sustainable and recognized as a global health priority.

The Foundation of Our Work

Twenty-five years ago, Raregivers began with a simple but profound recognition: caregivers navigating rare, chronic and complex diseases needed emotional support as much as their loved ones needed medical care. What began as one family's journey has evolved into a global movement spanning 38 countries and positively impacting the lives of hundreds of thousands.

The evening's atmosphere perfectly captured what Raregivers represents: a community where lived experience meets scientific research, where pharmaceutical executives sit alongside mothers of rare diseases, and where conversations bridge the gap between research labs and living rooms.

Our Champions in Partnership

The celebration honored the incredible partners who make our work possible. Leading our sponsors was EMD Serono at the Innovator level as part of our Global Leadership Council, joined by Takeda in championing whole-family care approaches in rare disease treatment. Acadia Pharmaceuticals and Ultragenyx joined as Honorary sponsors through our Raregivers Training for Community Leaders program. Amgen, Insight Experience, and Wildflower Apothecary provided Supporting level partnerships as part of our Train Hospital Staff in One City initiative, alongside numerous other organizations that recognize the importance of emotional wellness in healthcare.

Beyond corporate partners, we were supported by our Raregivers Partners coalition, including AME, RDDCx, Project Alive, Cadence, iRidoutcare, NORD, UBF Barcell Children's Hospital, Suerte, and others, who provide critical media, strategy, and volunteer support. Our Raregivers Sponsors, comprising families, foundations, and major donors like the Kakkis Family, Davis-Dauray Family, Skinner Family, Buscemi Family, Saleem Therapeutics, Rivard Family, Singh Family, Halsall Family & Friends, and many more, formed the heart of our community support.

These partnerships represent more than just funding; they signal a fundamental shift in how the pharmaceutical industry approaches care for rare diseases. When companies like EMD Serono embed emotional support tools in clinical trials, or Takeda trains patient liaison teams on caregiver trauma response, they're acknowledging what families have always known: treatment success depends on family wellness, not just patient outcomes.

Global Reach, Local Impact

Over the past year, Raregivers has reached 120,144 web visitors and engaged 78,545 people through social media. Most significantly, we've built meaningful engagement with 23,005 individuals across six continents, creating the largest global community focused specifically on caregiver emotional wellness.

But numbers only capture part of the impact. In hospital rooms and support groups around the world, Raregivers provides what statistics can't measure: the profound relief that comes when someone truly understands the weight you're carrying.

The RG100 Coalition Takes Shape

One of the evening's highlights was celebrating our inaugural Raregivers 100 honorees, leaders from music to medicine, technology to advocacy, who carry rare disease voices into spaces where policy gets made and minds get changed. These coalition multipliers amplify caregiver experiences to audiences who might never otherwise encounter rare disease realities.

What makes RG100 particularly powerful is its diversity. Our honorees include researchers advancing caregiver-centered protocols, musicians whose platforms reach millions, healthcare professionals training the next generation and technology developers building tools for complex medical needs.

Collaboration Through Strategic Partnership

The evening also marked exciting collaborative announcements, expanding our capacity to deliver evidence-based emotional support tools. Our Emotional Journey Map, now distributed globally through partnerships with organizations like Fondation Ipsen, continues reaching new communities. With translations available in over a dozen languages through our collaboration with Microsoft Corporation, we're ensuring that caregivers worldwide have access to evidence-based support.

The Path Forward

As we move into our next quarter-century, the conversations that began that evening continue in research labs, boardrooms and living rooms around the world. The partnerships formed that night are already reshaping how we think about rare disease care, moving beyond treatment-only approaches to recognize that sustainable healthcare requires supporting entire family systems.

For the 350 million people worldwide living with rare diseases and the families who hold hope and grief in the same human heart, this work is just beginning. What happens next, in those everyday moments when someone remembers a story they heard or makes a decision informed by a caregiver perspective, that's where the real transformation occurs.

Thank you to every sponsor, donor, honoree and attendee who made this milestone celebration possible. Together, we're proving that when you create a genuine connection between the people developing treatments and the families using them, extraordinary things happen.

Join our global community of Raregivers at raregivers.global to learn more about our programs and partnerships.