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Found 2 results

  1. MaryO

    Rare Disease Day

    What am I doing for Rare Disease Day? For me, it's more that one day out of the year. Each and every day since 1987, I tell anyone who will listen about Cushing’s. I pass out a LOT Cushing’s business cards and brochures. Adding to websites, blogs and more that I have maintained continuously since 2000 - at mostly my own expense. Posting on the Cushing's Help message boards about Rare Disease Day. I post there most every day. Tweeting/retweeting info about Cushing’s and Rare Disease Day today. Adding info to one of my blogs about Cushing’s and Rare Disease Day. Adding new and Golden Oldies bios to another blog, again most every day. Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April...and will anyone else participate? And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!) ~~~ Why am I so passionate about Rare Disease Day? I had Cushing's Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a "success" but I still deal with the aftereffects of Cushing's and of the surgery itself. I also had another Rare Disease - Kidney Cancer, rare in younger, non-smoking women. And then, there's the adrenal insufficiency... And growth hormone deficiency... If you're interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/ HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
  2. MaryO

    Rare Disease Day 2017

    Today is #RareDiseaseDay 2017! Today, with events taking place in over 90 countries all around the world, we hope to raise more awareness than ever for rare diseases! With the theme of research, and the slogan, 'With research, the possibilities are limitless', #RareDiseaseDay 2017 is an opportunity to call on all researchers, universities, students, companies, policymakers and clinicians to do more research and to make them aware of the importance of research for the rare disease community. This year's Rare Disease Day video, which has been viewed over a hundred thousand times and translated into over 30 languages, draws a parallel with a routine that many of us go through multiple times a day - searching for an answer on the internet. The video highlights how isolating it is when you search on the internet but receive the response 'your search had no results'. It also highlights the hope and promise that comes with additional research into rare diseases, something that must be continuously strived for. You are still able to participate in raising awareness of the day and be part of the change, by sharing the video, the poster, or any Rare Disease Day material on your Facebook, Twitter or other social media platforms. This year, on the tenth edition of the day, Rare Disease Day events will be held for the first time in four African nations, Botswana, Nigeria, Senegal and Sudan. Events will also be held for the first time in Saint Pierre and Miquelon.
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