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  • Rare Disease Day – – things to do this week

    Posted by Dagmar on February 20, 2022 at 7:02 pm

    Throughout February, BioNews, publisher of this site, is recognizing Rare Disease Month with our patient communities, culminating in Rare Disease Day on Feb. 28. Although not all our communities are rare, there is something about each one of them that makes them unique. Join us as we explore what it really means to be rare.

    1. “A Window Into RARE,” Feb. 28, 2022. A Rare Disease Day panel discussion presented by BioNews
    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&A!

    If you’re interested in participating in this free event, click the link below to sign up. REGISTER HERE

    2. Rare Disease Day News and Columns – All month long, patient columnists will be writing about and exploring what it means to be rare. Scroll down to the bottom of this page – – new columns added daily. CLICK HERE

    Share and list your rare disease day activities and suggestions below.

    Dagmar replied 2 years, 2 months ago 1 Member · 1 Reply
  • 1 Reply
  • Dagmar

    February 28, 2022 at 4:21 pm

    Today is Rare Disease Day: Feb. 28th – – today! ??Although it’s not really a “celebration” event, it is a month and day created to bring international awareness to the Rare Disease community. ❤ Along with writing topics about Rare Diseases, BioNews, asked us to write about “what being rare means to me” – – here’s my reply…

    What makes you rare?

    What does having ALS and being a part of the Rare Disease community mean to you? Is it helpful, or a burden?

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