Hemimegalencephaly is considered a RARE DISEASE, though it's not a true "disease" in the traditional sense. At an occurrence rate of 1:1,000,000 (best known rate per medical literature), we fit the 'rare' mold. Please take Feb. 28th to talk about rare diseases, the importance of research funding and drug development in the rare disease world. Talk about it with your friends, your family, and your coworkers. Spend the day raising awareness. So many of the rare diseases have been "orphan" diseases for so long, getting little attention from the medical field or from the pharmaceutical field. Thankfully, NORD and the entire RARE Community has been changing that! When we stand together as a RARE Community, we are no longer so "rare"... and that is a miraculous turn of events, that can lead us to do much greater things for each of our rare disease groups. It holds the promise of new treatments, new medical discoveries, and hope for a better future for those impacted by rare disease and the families that love them.
So, get out there and SHARE the RARE!
So, get out there and SHARE the RARE!