People living with Rare Disease know they live rare lives. It's tough being the zebra in the room, especially because our doctors rarely look for zebras. Even when they find out we are rare, most have no ideas about the unique day to day challenges facing those of us with Rare Disease. One major fact lies before most of us: we cannot count on a cure within our lifetimes. While new Rare Disease Collaborative Research models are starting to show promise, there are many unique challenges facing researchers working with rare disease. Luckily, our Rare Disease community is learning fast, sharing resources, propping each other up as we create unique solutions for researchers in Rare Disease. The internet has opened up amazing possibilities for growth and organization including globally connected, free access, Bioregistries that Rare Disease research can access from anywhere in the world. In the past, patients were scattered over large areas making research activities costly and diff
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Welcome to Living with Rare Disease! by Lori Verton Founder, ACMCRN Rare Disease Warrior There is a certain quality about the experience of living with a Rare Disease: a bit of an oxymoron in its character. By definition, a Rare Disease patient is one whose disease is found in less than 200 000 Americans (or about 1 in 1500) at any time. For those in Europe, the definition is similar at 1 in 2000 people, (See:https://www.rarediseaseday.org/article/what-is-a-rare-disease) . For those of us with any one specific disease entity, indeed we are a rare bunch, The spinal cord disease that I deal with, Adhesive Arachnoiditis, falls under this definition. Paradoxically, when Rare Disease patients are gathered together, we are actually not that Rare at all! An estimated 350 million people globally are diagnosed with one of the over 6000 known types of Rare Disease. (For a list of all types recognized in EU, see here: https://rarediseases.org/for-patients-and-families/
NCATS Toolkit - Home Living with Rare Disease was an isolating experience for so many, until the advent of the internet and social media. It's exciting to see the Rare Disease community as a whole coming together with tool kits and other resources! We stand on the precipice of fabulous new Rare Disease research initiatives. #RareDiseaseDay 2018 is less than a week away. Whether your zebra herd is #Castlemans, #PXE or #arachnoiditis, we are all of the same group! It's exciting time for Rare Disease.