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We envision a rare disease community with “agency”. Agency is defined as the capacity of individuals to have the power and resources to fulfill their potential
When living with a rare disease we are at the whim of our disease process in our bodies. Helplessness is a common feeling. While we cannot control our diease, per se, we can control what we do about it. That includes knowing about medication and treatment options and be a part of the medical plan decision making. Knowing about and speaking up when laws and regulations make an already complicated life with disease even more burdensome gives us “agency”.
Rare diseases, by their very nature, wear us down. Speaking up gets harder, and trying to explain something that often cannot be seen is tiring. And yet – speaking up is perhaps the most important aspect of successfully navigating rare disease.
Our site is designed to speak to you. In plain language. No frills. No fluff. Just information. Information is power. Let’s get empowered.
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FOR MORE INFORMATION ABOUT MEDICATIONS TO TREAT YOUR DISEASE