What it Took Me Two Years to Learn

I have to participate for change. You have to participate for change.  We are the best advocates for our children and our loved ones. Any major improvement in the rare disease space was started by a patient or caregiver, usually a mom. NORD was started by Abbey Myers because her son had a rare disease, as was Genetic Alliance. There are hundreds of disease-specific organizations out there that are the catalyst for research. I have never been among a more resilient and amazing group of people: moms and dads who sound like doctors and researchers, patients able to correctly diagnose themselves, children showing us everyday what amazing fighters they are. We have been fighting for years. Not enough has changed. Why? NORD has done an amazing job advocating and advancing the cause for thirty years. So why? I believe nothing will ever change until the rest of the world sees us for the 250 million fighters we are. So how? Social media, Facebook in particular. We recently started a new Facebook page called Hear O.U.R Voice. O.U.R. is Orphan.Undiagnosed.Rare. The only purpose this page serves is to provide a place where the global rare disease community can come together and be counted through “Likes.” How can you drown out the voice of 250 million people? We will be heard and our future will be awesome. Do you want to be heard? Participate!