What Does Rare Mean to/for You?
To me, RARE is a superpower. It is a constant reminder to choose life daily and to thrive regardless of my diagnoses. I am grateful for everything I’m capable of doing and incredibly happy to be an inspiration to others on this RARE, yet, beautiful journey of mine!
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​What Does Rare Mean to/for You?
​RARE not fair. God created me extra RARE, so that I can be a role model to the world!
​​What Does Rare Mean to/for You?
    As RARE Disease Day comes around again, I pause to reflect what it means to me. This is a day that once came and went with no recognition in my mind and now has a permanent place in my life forever.  On one hand, I recognize how much of a privilege it is to get a diagnosis, yet on another hand, getting diagnosed with a RARE and life-threatening disease is a never-ending challenge. 
    When I was diagnosed with moyamoya, I had never heard of it and even many of the “specialists” I saw were unfamiliar with it, never having seen a patient presenting with it in real life. This disease impacts brain function and everything the brain controls, so basically - everything. I was experiencing mini stroke symptoms, sensory issues, and my health was rapidly deteriorating while I searched for a doctor who could provide a treatment plan. I ended up undergoing brain surgery to correct immediate symptoms, though I still live with this disease every day.
    Through the process of exams, tests, and surgery itself, I learned how broken our medical system is and how much of society is impacted by ableism.  I lost friends, changed jobs, and moved across the country. I learned that being RARE means at times being invisible. I answered intrusive questions, struggled with accessibility, and mourned a life of health and certainty. 
   While all of this may seem bleak to people, I think it’s important to realize being sick and having these experiences makes me no less valuable, and I’m not sad about it.  I’ve learned to deconstruct internalized ableism, finding happiness in who I am as a person that isn’t tied to productivity or any superficial measures. 
   I’m grateful for a lot of things I used to take for granted and have greater peace of mind over things I can’t control.  Knowing that this disease could take my life in the blink of an eye, I’ve grown to value signs of aging and actually look forward to aging, living to fight another day.
​​What Does Rare Mean to/for You?
I’m RARE because of my diagnoses, but that’s not all. I’m  RARE because I’m not only disabled, but I’m a nurse, an advocate, a leader, and an athlete. Being RARE has made me who I am and I wouldn’t change it for the world.
​What Does Rare Mean to/for You?
"I felt lost being diagnosed as RARE but found myself in the end because the knowledge of my rareness gave me friends, family and a community. Knowledge is power, knowledge is community, knowledge is awareness, knowledge is knowing we are RARE!"

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​​What Does Rare Mean to/for You?
I love being part of the RARE disease community, as it means my uniqueness is out and visible to the world.
​​​What Does Rare Mean to/for You?
RARE means diverse, unique, distinctive. We as individuals are ALL RARE. However, when you are living with a RARE disease, it also means excluded, misunderstood, and unfamiliar. The society we have built unfortunately is not conducive with RARE. Not only do we face an unknown future due to lack of knowledge and treatment in a medical setting, but we also are thrusted with the difficulties of being isolated in a world that caters to the medically “normal” and neurotypical . We ARE special, we do have a lot to offer, and our lives are just as valid as anyone else’s! We deserve to be not only included, but truly listened to and valued. Imagine how wonderful it would be to live in world where we can drop the facades and live fully accepted as we are.
​​What Does Rare Mean to/for You?
When I think RARE, of Yaros condition specifically I feel frustration. 
For him not being met as an individual, but him being generalized to Lissencephally description on Google. 
Frustration for our struggles and concerns being dismissed due to his diagnosis. 
And in general, the need to advocate for his needs on every step. From getting necessary equipment to therapy and his needs being met 
And of course that no one is actively looking for a cure.
​​What Does Rare Mean to/for You?
RARE is beautiful, RARE is real, RARE is fabulously living with NMO
​​What Does Rare Mean to/for You?
I would say to me RARE means extra special and one of a kind. RARE is different, but it doesn’t necessarily mean that it’s bad. I own my RARE diseases with pride and am happy to be spoonie with lupus, gastroparesis, kidney failure, blood clots, and a whole host of other things!
What Does Rare Mean to/for You?
“One out of every 10 patients diagnosed with Lupus are Men, that makes me RARE. While it’s RARE for a man to have Lupus, what’s even more RARE, is a man that Advocates for Lupus.”
In 1995, it was RARE for men to be diagnosed with lupus. At that time, there were no resources for me to look up my newly diagnosed condition. After 25yrs later from being diagnosed, I learned to turn my pain into power and express it in my advocacy. Therefore creating my organization Male Lupus Warriors.
What Does Rare Mean to/for You?
Being RARE, is a privilege.
Being RARE is my purpose.
Being RARE is Advocacy.
Being Rare is extending love to the furthest person in the room.
Being RARE is remaining unusually remarkable
What Does Rare Mean to/for You?
RARE is living fearleslly and bravely.
​​​What Does Rare Mean to/for You?
RARE means, Uniquely Special.

Special Thanks, and a huge round of applause to
​Jamie Frederick, for photo and video elements.