Reflecting on a Year of Impact and Looking Toward 2026
As we pause to reflect on the past year, one truth stands out clearly: The rare disease community is stronger, more connected, and more visible than ever before.
This year-in-review is not simply a list of accomplishments but a collective story of courage, growth, and shared purpose. It’s a moment to honor what we’ve built together and to look ahead with clarity and conviction toward Raregivers 2026.
For caregivers, families, clinicians, advocates, and supporters across the globe, this past year has been marked by meaningful progress. Sometimes, that progress was quiet, but it was always rooted in deep care for those navigating rare disease journeys.
As we reflect on impact, we do so with gratitude and an unwavering commitment to what comes next.
A Year Defined by Connection and Growth
The rare disease experience can be isolating. For too long, caregivers have carried emotional, physical, and financial burdens without sufficient recognition or support.
Over the past year, Raregivers has worked intentionally to change that reality by centering caregivers, amplifying their voices, and building spaces where no one has to navigate alone.
Through expanded programming, storytelling initiatives, and global partnerships, we have seen growth in the rare disease community in both reach and depth. More caregivers are finding one another. More families are accessing evidence-based emotional support.
More healthcare professionals and advocacy groups are engaging caregivers as essential partners in care.
But this growth isn’t just about numbers: It’s about trust. It’s about caregivers feeling seen, heard, and validated, about building a shared language for the emotional journey of caregiving and recognizing that resilience does not mean going it alone.
Reflecting on Impact: What We Have Learned
When reflecting on impact, it’s essential to look beyond outputs and toward outcomes. This year reinforced several core lessons that continue to guide Raregivers' work.
First, emotional support is foundational. Caregiving sustainability depends on emotional well-being. When caregivers are supported, families are stronger, outcomes improve, and communities thrive.
Second, the community itself is a powerful form of care. Peer support through shared stories, support groups, and training pathways creates belonging and reduces isolation in ways no single resource can.
Third, caregivers are experts. Their lived experience offers invaluable insight for healthcare systems, researchers, and advocacy organizations. Elevating caregiver voices strengthens the entire ecosystem.
Finally, impact must be both measurable and human. Data matters, but so do stories. Over the past year, Raregivers continued to pair evidence-based tools with authentic storytelling to ensure impact is credible and deeply human.
These lessons shape not only how we reflect on the past year, but also how we design the future.
The Raregivers 100 as a Cornerstone of the Year
One of the year's most meaningful milestones has been the continued growth of the Raregivers 100 initiative.
Designed to spotlight caregivers and advocates who are shaping the future of rare disease support, Raregivers 100 has become a powerful platform for recognition, connection, and shared learning.
Through Raregivers 100, caregivers are not only honored but also recognized. They’re empowered. Their stories educate medical professionals, inspire policymakers, and remind the broader community that caregiving is both deeply personal and profoundly impactful.
As we look toward 2026, Raregivers 100 will remain a cornerstone initiative, continuing to expand its reach, deepen its impact, and elevate caregivers as leaders in the rare disease space.
Looking Ahead: Raregivers 2026 Goals
Reflection is only meaningful when it informs action. As we look ahead, Raregivers 2026 represents both an ambitious vision and a shared responsibility.
Our goals for 2026 are rooted in scale, sustainability, and systemic change. They include reaching and supporting millions of caregivers globally, so caregivers across geographies, diagnoses, and life stages can access emotional and community-based support.
They also include strengthening cross-sector partnerships with advocacy groups, healthcare institutions, and industry partners to embed caregiver-centered approaches into care models.
In addition, Raregivers will continue expanding training and leadership pathways that equip caregivers to serve as navigators, facilitators, and trainers within their communities. We’ll advance evidence-backed tools and reporting to demonstrate the measurable impact of caregiver support on health outcomes and family wellbeing.
We’ll also continue to shift the narrative so that caregiving is visible, valued, and recognized as essential to the rare disease ecosystem.
These 2026 goals are intentionally ambitious because caregivers deserve nothing less.
An Invitation to the Community
Whether you are a long-time Raregivers member, a newly connected caregiver, a donor, clinician, or advocacy partner, this moment belongs to all of us.
The progress of the past year was made possible through shared commitment. The future will be shaped the same way.
If you’re a caregiver, your story matters.
If you’re a healthcare professional, your partnership matters.
If you’re a donor or advocate, your belief in this work matters.
Together, we’re building a future where caregivers are not an afterthought, but a central force for change.
Moving Forward Together
As this year-in-review comes to a close, we hold both pride and purpose. Pride in what has been accomplished. Purpose in what remains to be done.
Reflecting on impact reminds us that progress is rarely linear, but it is possible when rooted in empathy, evidence, and community. Looking toward 2026, we move forward with clarity, collaboration, and hope.
Thank you for being part of this journey. The rare disease community is growing, and together, we’re shaping a future where caregiving is sustainable, supported, and seen.
