Rare Disease

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    Rest when it's needed

    <p>Rest when it's needed</p>
    15 people are talking about this
    Community Voices

    A Lil pop of my color for you!

    <p>A Lil pop of my color for you!</p>
    14 people are talking about this
    Community Voices

    What was the last problem you solved?

    <p>What was the last problem you solved?</p>
    26 people are talking about this
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    Missing this sweetheart extra today

    <p>Missing this sweetheart extra today</p>
    7 people are talking about this
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    Rudeness

    <p>Rudeness</p>
    51 people are talking about this
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    Here is the final gift for my friend.

    <p>Here is the final gift for my friend.</p>
    24 people are talking about this
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    So proud of this!!!

    <p>So proud of this!!!</p>
    8 people are talking about this
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    Hard medical news…

    <p>Hard medical news…</p>
    14 people are talking about this
    Community Voices

    When Will Health Insurance Companies Become Inclusive To Rare Disease Patients?

    I was told after the third appeal by my doctors that my health insurance company will not approve the ONLY treatment that is available for my neuromuscular autoimmune condition because “it’s currently not on their list”.

    They could simply “update their list” to be #inclusive and medically accurate, but they refuse to give it a second thought, even with my doctors telling them, “It’s the gold standard of treatments.”

    Without insurance the treatment is upwards of $9,700+ each, which I need monthly.

    My condition continues to progress. It’s already #disabled me and I use a power #wheelchair now because walking is so painful and difficult and it’s enveloped my entire nervous system now creating a blockage in my heart.

    I’m only 31 with a full life ahead of me.

    At what point will I be able to simply #access a treatment option that even the NIH had successful clinical trials for?

    What legal way is there to conquer this?

    #healthinsurance #clinicaltrials #inaccessible #accessibilitymatters #accessibility #medicalcare #immunotherapy #marginalized #zebracare #RareDisease #rarediseaseawareness

    1 person is talking about this
    Community Voices

    👆👆👆👆👆

    <p>👆👆👆👆👆</p>
    9 people are talking about this