Rare disease patients don’t live the typical life of the general public. Going to the doctors over 3 times a week is not out of the ordinary. Having a larger medicine collection than makeup was never second-guessed. Going to sleep over going out is often an easy decision to make. We spend the majority of our lives waiting for the other shoe to drop. While we are hopeful for a cure, or even just a treatment that might ease the symptoms, we often find ourselves disappointed. Go

When you or your child receives a rare disease diagnosis, your entire world changes. Life as you know it is dismantled and your carefully-crafted dreams appear derailed. You encounter tumultuous emotions that turn your world upside down. For patients, their relationship with their bodies radically change. In fact, a dissociation takes place. The body they once accepted as their own, as a servant that should obey, function, give pleasure, is now a body that has betrayed them

Love is an incredible feeling that some dedicate their entire lives to seeking. Love is a mysterious, undeniable force that at times can be confused for infatuation. Sometimes love and infatuation go hand in hand. When life’s trials and tribulations expose true love because of its unconditional nature, there’s no doubt in one’s mind that you are in love. Finding your one true love is a mission most of us spend our life seeking. For me it happened in college. Everyone saw her

It starts off with a feeling that something’s just not right. Whether that feeling comes from the person with a condition or the parent who is raising a child struggling with a condition, the unrelenting stress of suspecting something is wrong, then looking for answers, only to learn that you belong to the World of Rare, is a journey you have to personally experience in order to understand. The World of Rare is not only poorly understood by the general public, but also by the