Rare Disease Day, I have a rare disease.

On By WendyIn Chronic Illness
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rarediseaseday.us

Today is Rare Disease Day. “Any disease, disorder, illness, or condition affecting fewer than 200,000 people in the United States is considered rare.” (rarediseaseday.us) There are more than 7000 rare diseases and disorders in the US. That comes to over 30 million people who have a rare disease. It’s not so rare huh?
Some of you may know that Ménière’s Disease is a Rare Disease, it is listed on the National Organization for Rare Diseases (NORD) registry.  The information they have listed about Ménière’s  Disease is interesting.  Please go check it out.  Even I learned a thing or two.  🙂

Benign paroxysmal position vertigo (BPPV) is also on the Rare Disease registry.  You can read more about it here.  I’m very impressed by the information available on NORD, if you have a rare disease, or want to know more about one, I urge you to look it up on the National Organization for Rare Diseases (NORD) site.

Having a rare disease normally means that there is little known about the disease, we go from doctor to doctor hoping to find out more.  Hoping to find help.  More research is needed for all rare diseases.  Contact your local representative to speak out for your disease and make sure more research is provided.  You can find out how to contact your representative here.

“NORD’s Rare Disease Database provides brief introductions for patients and their families to more than 1,200 rare diseases. This is not a comprehensive database since there are nearly 7,000 diseases considered rare in the U.S.”  *from NORD website

 

Do you have a rare disease?  Curious, have you ever contacted your representative about it?

 

 

 

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9 thoughts on “Rare Disease Day, I have a rare disease.”

  1. bipolarbarbieq

    WOW! I didn’t know this existed! I’m ready to peer in and see where all my shitty health issues lie, maybe I’ll make the cut 😉 Been thinking about you in my absence my dear ❤

    Liked by 1 person

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  3. Glad you posted this, Wendy. SO many people have no idea. I included this Awareness Day on February’s Mental Health Awareness calendar, along with some information about it (and links too). I’ll leave a bit here.

    More Americans live with a rare disease than the sum total of those who have either HIV, Heart Disease or Stroke — almost 1 in 10 people.

    I was shocked to learn that ALL childhood cancers qualified as “rare” — and that an estimated 50% of people with cancer are battling a rare form (which includes brain, pancreatic, ovarian, thyroid, and stomach cancers, leukemia and lymphoma, in addition to ALL pediatric cancers.)

    But here’s the REAL kicker, for anyone into statistics:
    ~~~~~~~~~~~~~~~~~~~~~
    “90% of American healthcare providers must attempt to treat the majority of rare disease patients with Non-FDA approved drugs – frequently only after cutting through layers of administrative red tape to be able to include them as study participants (in studies that are even willing to accept patients who might lower their survival statistics).” [from my article]

    Insurance nonsense aside, the state of health care in this country is truly abysmal — especially for a country whose president touts it as Number ONE!!!

    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMORE dot com)
    ADD Coach Training Field founder; ADD Coaching co-founder
    “It takes a village to educate a world!”

    Liked by 1 person

    Reply

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