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Found 3 results

  1. Join our Rare Disease Day virtual panel discussion as BioNews columnists from a variety of our rare communities participate in a lively conversation with fellow patient advocate Liza Bernstein. This window into often overlooked aspects of life with a rare disease will provide a variety of patient perspectives. Topics will include awareness and advocacy, equity, mental health, empowerment, and more. We invite everyone to join us for this signature event and look forward to your participation in the Q and A! Panelists: Paris Dancy, Columnist, Cushing’s Disease News Michelle Gonzaba, Columnist, Myasthenia Gravis News Claire Richmond, Columnist, Porphyria News Sherry Toh, Columnist, SMA News Today Hosted by Liza Bernstein, Patient Advocate & Sr. Director Patient & Community Engagement Time Feb 28, 2022 02:00 PM in Central Time (US and Canada) Register at https://us06web.zoom.us/webinar/register/WN_dylme0wBRCyH8TfQ7B6x-w
  2. Join our Rare Disease Day virtual panel discussion as BioNews columnists from a variety of our rare communities participate in a lively conversation with fellow patient advocate Liza Bernstein. This window into often overlooked aspects of life with a rare disease will provide a variety of patient perspectives. Topics will include awareness and advocacy, equity, mental health, empowerment, and more. We invite everyone to join us for this signature event and look forward to your participation in the Q and A! Panelists: Paris Dancy, Columnist, Cushing’s Disease News Michelle Gonzaba, Columnist, Myasthenia Gravis News Claire Richmond, Columnist, Porphyria News Sherry Toh, Columnist, SMA News Today Hosted by Liza Bernstein, Patient Advocate & Sr. Director Patient & Community Engagement Time Feb 28, 2022 02:00 PM in Central Time (US and Canada) Register at https://us06web.zoom.us/webinar/register/WN_dylme0wBRCyH8TfQ7B6x-w
  3. 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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