The Back Story

Can we all agree that cancer is one of the scariest and worse diagnosis one can be given? 

I can only assume your response was a resounding yes. I'm certain by now you must personally know of at least one person that has went through this dreadful ordeal. They were most likely whisked away into a treatment protocol at an almost dizzying pace. 
 

What if you had visited doctor after doctor for more than three years and nobody could tell you what was wrong? 

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What if your child's pediatrician told you that they didn't have an answer for the bizarre set of symptoms plaguing your daughter/son? 

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What if you received the news that you have an incredibly rare disease only to find out that there isn't any treatment? 

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Well those three questions are very much the hard to believe reality of a patient with a rare disorder. It takes a mind blowing average of seven years for a patient to get an accurate diagnosis. There are more than 7000 known rare diseases and less than 5% of those have an approved treatment option. Rare disease is actually not that rare, on average 1 out of 10 people will be diagnosed with one in their lifetime.

In order for the necessary changes to be met a massive revision in policies, funding, legislation, education, technology, and how information is exchanged needs to occur. I began working as a Rare Disease Patient Advocate/ Agent of Change in 2020 lending my talents to be a voice for those that have unmet needs. Additionally, I serve as the Programs Manager (Volunteer) for a Rare Disease Patient Support Nonprofit.  

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