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.

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.

What happens when things are uncertain?Where do you go when everything feels like just too much?When you’re caring for a child with a Rare disease, uncertainty becomes a daily companion. The unknowns can pile up fast, and with them comes a very specific kind of emotional fatigue.

There are places inside us we only go when we’re hurting. Places where words falter and the heart feels unbearably heavy. These are the dark corners of our emotional landscape—where grief, fear, and a deep, aching anguish live. As a Raregiver, these places may become familiar. Not because you choose them, but because the path you’ve been given leads you through them again and again.

When we fall into comparison, we suffer. Comparison was the subject of our Women's Empowerment Circle this week. It can be very challenging, not to compare your Rare child to other people's neurotypical children. Comparing often leads to feeling less than or not enough and it may take you down a rabbit hole of self-deprecating thoughts.

For many caregivers, holidays can be complicated—and the Fourth of July is no exception. While others are enjoying fireworks and carefree celebrations, caregivers of those with rare, chronic, or complex conditions often find themselves feeling out of step with the world around them.

At Raregivers, we see you—and we’re here to support you through moments of joy, overwhelm, and everything in between.

As a Raregiver, it can be easy to lose yourself in caring for your Rare child or children. You may experience a radical shift in your perspective on life and being the parent of a Rare child becomes your primary identity. When this happens, self-care often falls away or drops to the bottom of your impossibly long to do list. Priorities shift and you dive headlong into learning everything about your child’s Rare disease as well as managing their care each day.

Prader-Willi Syndrome (PWS) is a rare and complex genetic disorder that affects approximately 1 in 15,000 to 1 in 30,000 people worldwide. Often diagnosed in infancy, PWS requires lifelong care, support, and specialized resources for both the child and their family. At Raregivers, we recognize the challenges of caregiving for a child with a rare disease like PWS and are here to support you every step of the way.

Anticipatory grief is a very tender topic which invites you to be with hard feelings, to sit, breathe and open to everything that is arising. In moments when you feel overwhelmed by the depth of feelings that is washing over you, ask for help. We are here to support you.

Father’s Day is a time to honor the strength, sacrifice, and love of dads everywhere—but for fathers of children with rare diseases, the day holds deeper meaning. These fathers walk a path filled with medical complexities, emotional strain, and often unseen acts of caregiving. At Raregivers, we’re proud to stand beside every dad who shows up, day after day, for their child with a rare condition.

Having a Rare child radically changes you and your world, and some of your old friends will not be able to relate to your current life. It's possible that they won't know how to act around your Rare child or they may innocently make an inappropriate or hurtful comment about them. How do you communicate your needs to these friends and what if anything may be getting in the way of being honest? There are many benefits to having old friends, and there is a deep benefit of being in community with other Raregivers. This is what we are here for.

Being a Raregiver is inherently vulnerable. It can be vulnerable to even acknowledge certain parts of yourself, to allow them to surface and be held with love. These are the places calling for self- compassion, love and validation. As a Raregiver, you have lots of tender places as you contemplate the future which may include how your Rare child will fare after you're gone or what it may be like to lose them. Mortality is vulnerable. Allowing yourself to feel your own mortality and your fear around it will create room for you to rest deeper into yourself.

The first thing needed for team play is to be on your own team and be connected to yourself so you are able to notice what you need from moment to moment. First, be the leader of yourself. As a raregiver, you coordinate lots of different people from family members to medical professionals, and you need skills to be an effective leader. These may include being a good listener, offering validation, bringing curiosity and refraining from being critical to name a few.