• Rare Disease Day 2023

    Posted by Amanda on February 7, 2023 at 9:15 am

    Did you know that there are more than three million people around the world that have a rare disease? In an attempt to bring attention and advocacy to many of these diseases, Rare Disease Day was started. It is February 28th of every year.

    At ALS News Today we are all in on Rare Disease Day, February 28th! We will share more about how we will participate soon!

    Have you checked out the Rare Disease Day website yet? Go ahead, and look it over. What events would you like to participate in to help raise awareness for ALS? Have you been involved with advocacy and awareness prior to ALS entering your life?

    Kathleen B (Katie) replied 1 year, 5 months ago 2 Members · 2 Replies
  • 2 Replies
  • Kathleen B (Katie)

    February 7, 2023 at 4:47 pm

    I did indeed browse the Rare Disease website.   However, I found it more & more impossible to be positive and ‘feel good’ about being part of such a community.
    I am so sorry…being part of a rare disease category community is not for me—it is NOT helping the political community at all—they are totally ignorant of the needs and dire circumstances of persons in this category.  And, many of us in this 300 million of those affected do not have the time & resources, nor lifespan time, to add this task to our own or caregiver responsibilities.  What IS NEEDED is less ‘race to space’ and ‘race to being most powerful military nation’ among the world governments.  Billions would be available instead for research and medical professionals to truly help the individual, the society, and  the world. I truly hope this makes sense—we need to have a Feb 28 dedicated to CONQUERING HEROES who come up with rare disease solutions! Wouldn’t that be a celebration of true significance SO MANY in the world could become aware of & promote!

    • Amanda

      February 9, 2023 at 11:17 am


      I remember Dagmar commenting (and writing a column) about a similar topic.  It was regarding ALS Awareness Month and being overloaded with information.  Her piece was insightful and showed me a different perspective.  I’ll find it and post a link.

      Your points of view, and feelings are understandable.

      Do whatever you need to do to be in a positive state of mental health. If participating or advocating is someone’s skill set and empowering then that’s an avenue they can pursue.  Clearly we are all here to support one another, and in my opinion, there is no Right or Wrong way; just the way that works for each person.


  • Kathleen B (Katie)

    February 11, 2023 at 11:05 am

    Thank you Amanda—for reply & understanding.  And, just this AM (2/11) I read an article by another Bionews writer (Mr. Clingman) that ideas I have thought before but feel alone in thinking.  It was his SOS for advocacy, but in terms that were more relatable for me.  I will keep doing what I can, long as I can…but overall, we are a short-lived minority that moves on before much actually gets accomplished  in the ‘real world’ of perpetual motion and short term goals and accomplishments.

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