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.

Explore the rare disease caregiver challenges families face every day and support caregiver advocacy, emotional understanding, and stronger rare disease awareness

This week in our support group, we reflected on what it means to be a true friend. Together, we defined a true friend as someone who can meet you with a quiet mind and an open heart. As caregivers navigating the uncertainty of Rare or chronic illness, it is important to remember that the first person you must learn to be a true friend to is yourself

Strengthen caregiver wellbeing through emotional support healthcare, peer connection, and caregiver emotional care designed to support long-term resilience.

Experiencing high levels of stress or burnout? Learn how to recognize an emotional crisis and access immediate caregiver crisis support.

Caregivers often put their own needs last, which, however well-intentioned, is difficult to sustain. Explore caregiver self-care strategies that support mental health.

As a caregiver navigating the world of Rare disease and a complex medical lifestyle, the first step toward caring for yourself is recognizing that you have needs too. Your needs matter.

Women caregivers make up the majority of caregiving globally. Explore the emotional labor, gender gap, and need for greater support and recognition.

Explore the hidden mental health challenges caregivers face, including burnout, emotional stress, and isolation. Learn how support and community can improve caregiver wellbeing

As a caregiver for a loved one with a Rare disease, setting boundaries is one of the most powerful acts of self-love you can practice. When you set internal or interpersonal boundaries, you prioritize yourself—your sleep, your nourishment, and your well-being. You keep appointments with yourself to exercise or rest, which is a way of honoring your own worth.

Anticipatory grief is a quiet, constant companion for many rare givers. It doesn’t arrive all at once or move in a straight line—it ebbs and flows alongside uncertainty. When there is no clear diagnosis or no predictable path forward, the mind naturally tries to fill in the gaps, imagining outcomes and searching for ways to control what cannot be controlled. You may notice that grief resurfaces in waves—during conversations with others, at medical appointments, or even in ordinary moments that suddenly feel fragile. This is not a sign that you’re doing something wrong. It’s a reflection of how deeply you love.

Having a strong reliable team is paramount for a raregiver. Remember your rare family is in this together, to share a common vision and goals. The importance of forming a strong team includes everyone from your partner, children, healthcare professionals, friends and even neighbors and co-workers. Key elements that make a great team are collaboration, listening, validation and improving communication skills. It is vital to know what your needs are and your capacity from day to day so you can learn how to lean on your team and know when you need to delegate to your support system.

Discover the power of caregiver stories through Rare Truth, a campaign inviting rare disease caregivers to share honest experiences, build connection, and strengthen community.

Learn what to expect from a Raregivers support group and how peer emotional support helps caregivers feel understood.

Caregiver emotional support is essential for mental health and sustainable care. Discover how rare disease caregiver support and community connection help reduce burnout, stress, and isolation.

As a caregiver it can feel as though there is a constant juggling act of tasks and responsibilities to manage. The challenges of keeping everything going and the desire not to drop a ball so to speak becomes a daily life circus, but what happens when everything has to drop to manage the task at hand? The emergency or doctors appointment or attention that must be given, requires the caregiver to practice presence and grace for what may need to fall in order to manage the most present need.

When your life as a caregiver shifts suddenly—symptoms changing, roles evolving, work hours reduced or lost altogether—it can feel like the ground beneath you has disappeared. The mind tries to regain control by racing ahead, spinning stories, searching for certainty where there may be none. And yet, this is the moment to come back to your body. To anchor. To steady yourself in what is actually here. Caregiving, especially in the context of Rare disease, asks you to live with ongoing uncertainty. The most sustainable way through is not by figuring everything out, but by placing one foot in front of the other and returning, again and again, to the present moment.

Discover how caregiver community support can reduce isolation, provide emotional validation, and enhance resilience for those caring for loved ones with rare diseases. 

Caregiving has a way of narrowing your focus to what’s urgent, what’s broken, and what still needs to be fixed. The daily rhythm can become transactional—appointments, medications, meals, logistics, survival. And yet, within all of that, there is still a relationship breathing underneath the tasks. There is still love. Gratitude invites you to shift your attention, even briefly, from what’s not working to what is. When you begin to look for the good in your partner and the people supporting you, you start to feel the sincerity of their efforts and the purity of their intentions. What you focus on grows. So be intentional. The seeds you plant—your thoughts, your words, your attention—are shaping the garden of your relationships every single day.

Caregiving asks a lot of you. Whether you’re supporting a child, a partner, a parent, or another loved one, your days can quickly become centered around someone else’s needs. In this week’s Women’s Empowerment Circle, we explored what it means to make caregiving sustainable. The question we began with was simple: what is self-care? It’s not a luxury or something you get to later, it’s the foundation that allows you to keep showing up.