This is a place to celebrate what makes you rare and share it with the world. This is our story. We embrace what makes us different and the challenges we overcome every day.
My journey to finding RARE. Began before I even knew what was happening. I wish I could say I went through all the stages and found the silver lining on the other side. But that's not my story. I am far from what one might call maintenance of my disease, and every day is a physical, emotional, and mental battle. I continue to struggle to accept the new version of myself and most days outright refuse to acknowledge my new limitations. From being a ridged planner always with a schedule and to-do list, I am not at the hands of a disease that barely has a name. Although challenging at times, I'm not angry, but four years later, I still am in disbelief. However, there are good things that have come out of this change. Over the last four years, I have learned so much about myself and the rare disease world, and through this journey, I continue to gain insight like never before. Being a part of this community has allowed me to see things I couldn't possibly see before living in the land of the sick as I like to call it. Among the most astonishing is how many people silently suffer from rare and invisible challenges. The realization so many are fighting a battle, no one else knows anything about sparked a fire within my soul to create and cultivate a safe, unique and, RARE. community. Wanting people from all different paths to feeling safe and welcome, the herd began to develop. So I hit the ground running, trying to create this space that is now known as the "the RARE. herd".
By definition, herd means to gather and move as a group. After doing my research on what it meant to be in the rare disease community, I learned the symbolic meaning of the zebra and why it was a staple; the zebra represents community, freedom, balance, and individualism. Wanting people from all different paths to feel safe and welcome, the herd began to develop. And today, I am more than honored to be apart of the most supportive, amazing herd. All of you.
We are proof that there is power in numbers. The sense of community, blending of all types of humans and willingness to love the uniqueness of one another is truly a powerful thing. RARE. was initially started with one voice, my own, but has grown to a voice more powerful than I could have imagined. Our voices are growing louder together, and together, we will make a change.