Meet the Raregivers100, a global tribute to 100 rare disease changemakers; individuals who are shaping the future of rare and chronic disease awareness, advocacy, and caregiving. From globally recognized voices to grassroots changemakers, these honorees are helping bring visibility, dignity, and action to communities too often left in the shadows.

This week in our Tuesday Women's Empowerment Circle we talked about having needs, making requests, and setting skillful boundaries. As a raregiver you have a very full life and may have both Rare and neurotypical children. It may not be uncommon to take on extra things at your neurotypical child's school and feel like you end up being stretched. In times like these, it's useful to use your team. First, you need to recognize that you have needs by slowing down, pausing, looking inside, and discerning what it is that you need. Many raregivers find that it is useful to create routines to support healthy habits and create sustainability.

Discover how Raregivers supports and empowers rare disease families with emotional care, community connection, and meaningful giving.

Boundaries are an act of self-love. They keep us safe from the perils of our own inner critic, prevent us from saying yes to draining activities, and help us refrain from indulging in unhealthy habits. Boundaries are, in essence, a way of holding our own hearts.

The focus of our Women's Empowerment Circle this week was on nervous system regulation, and how to stay calm especially when you are noticing changes (Stage 1 on the Emotional Journey Map) in your Rare child. As a Raregiver, you may often be in a state of hypervigilance which is very taxing for the nervous system. The question is how can you set yourself up to be resourced even when you are sitting with your Rare child as they undergo their fiftieth surgery?

This week in our Women's Empowerment Circle we looked at what comes up when you first receive a diagnosis for your Rare child; this is stage two "adjusting to the diagnosis" on the Emotional Journey Map. You will likely experience an array of feelings from disappointment, to sadness to anger.

You might find that you are frustrated as you look for answers and become the resident expert on your child's Rare disease. You're now navigating mountains of extra paperwork and a system that is inherently broken. Perhaps you experience anger at the system and disappointment that your life is turning out vastly differently than you had imagined it would.

Belonging is a basic human need–we thrive when we are part of a tribe and in the days of saber tooth tigers, our survival depended on it. At our core, we want to feel seen, accepted, and embraced for who we truly are. Yet many of us move through life carrying the quiet ache of feeling like outsiders—whether in our families, our communities, or even in our own hearts. That sense of disconnection can leave us doubting ourselves, spinning in worry, or questioning if we’ll ever truly fit in. As a raregiver, you have likely experienced feeling like an outsider on a regular basis. It can be tricky territory to know how much to share with people who are not raregivers. 

Every November, National Family Caregivers Month reminds us to pause and recognize the families who show up, day after day, for someone they love. For those living with rare diseases, caregiving isn’t a choice. It’s a way of life. It means carrying the invisible weight of appointments, treatments, and emotions that few others ever see.

Few stories capture that reality better than Sam Humphrey’s. The actor, known for The Greatest Showman, has been open about his life with a rare condition and how his family stood beside him through some of his hardest years. His journey shows us that caregiving is not just about medical management—it’s about devotion, endurance, and love in its purest form.

In Recognition of National Family Caregivers Month - November 2025

Mental health rarely happens in isolation. When one person struggles, an entire family feels the impact. When one person begins to heal, everyone begins to breathe again.

That truth lies at the heart of our latest Raregivers conversation with Sam Humphrey, the actor and advocate best known for The Greatest Showman. In Part 2 of his story, released this November for National Family Caregivers Month, Sam speaks about his ongoing journey through mental health challenges and how his family carried both his pain and their own.

The focus of our Women's Empowerment Circle this week was on nervous system regulation, and how to stay calm especially when you are noticing changes (Stage 1 on the Emotional Journey Map) in your Rare child. As a Raregiver, you may often be in a state of hypervigilance which is very taxing for the nervous system. The question is how can you set yourself up to be resourced even when you are sitting with your Rare child as they undergo their fiftieth surgery?

Maintaining friendships as a Raregiver can be challenging and you may find that you don't have the energy or mental capacity to make plans; sometimes having to explain the ins and outs of your medically complex life just feels like too much. Maybe it's awkward for you to bring up your Rare child's disease because as soon as you do, the relational dynamics change. Perhaps you've actually been ghosted by people you thought were your friends? Maintaining friendships and communicating with friends who don’t have a Rare child can be challenging. It can be hard when friends talk about their child hitting certain milestones, like potty training while your Rare child who is now a young adult is still not potty trained. We had a rich conversation about how to navigate these kinds of situations.

When you become a full-time caregiver, communication with your partner can shift in subtle and profound ways. The demands of caregiving can leave little space for the tenderness and patience that once came more easily. You may find that exhaustion or stress lead to curt words or silence where there used to be laughter and connection.

In our Women’s Empowerment Circle today, we opened the conversation around what it means to live with an open heart. It’s tender territory—vulnerable, uncertain, and deeply human. There’s a quiet kind of courage required to let yourself be truly seen, not just in your strength, but in your insecurity, your hesitation, your imperfection

Today in our Women’s Empowerment Circle, we dove into the theme of hope—what it feels like, how to stay connected to it, and what pulls us away from it. For Raregivers, this isn’t a theoretical conversation. It’s deeply personal. Navigating the intense demands of caregiving—specialist appointments, endless paperwork, emotional strain—can often make hope feel out of reach. But as Brené Brown reminds us, “Hope is a function of struggle. We develop hope not during the easy or comfortable times, but through adversity and discomfort.” And for Raregivers, adversity is a frequent companion.

The "Journeys of the Heart" gala was extraordinary. But here's what I've learned over 25 years: a beautiful evening creates a moment. What happens next creates a movement.

That's why we launched the Raregivers100.

Celebrating 25 years of rare disease caregiver support. See how community, advocacy, and partnerships are shaping the future of family wellness.

In today’s Women’s Empowerment Circle, we reflected on something that can be easy to overlook: the places we go when life is good. Too often, our attention is pulled toward what is hard or heavy, and today we celebrated growth—growth in our emotional health, in our ability to notice when we need rest, and in our capacity to actually take that rest without guilt.

In recognition of World Mental Health Day, Raregivers sat down with actor and advocate Sam Humphrey (The Greatest Showman) for one of the most honest conversations we’ve ever shared, about mental health, faith, and what it means to live rare.

When stress hits—especially if we’re not resourced or haven’t tended to our own self-care—it’s easy to slip into old patterns. Maybe we shut down, lash out, numb, or simply go through the motions. These responses are not failures rather they point to being depleted. They are signs that we are in need of support. They are invitations to return to ourselves.

That’s why spaces like this circle matter. By simply showing up, week after week, we create a rhythm of checking in, of being supported, of remembering ourselves

Observed each year on July 22, National Fragile X Awareness Day shines a light on Fragile X syndrome (FXS)—the most common inherited cause of intellectual disability and a leading known genetic cause of autism. For many families, this day is not only about raising awareness but also about honoring the strength, resilience, and love that define their caregiving journey. At Raregivers, we stand with you, offering support, education, and resources every step of the way.