In September 2019 Natpara, the only FDA-approved parathyroid hormone treatment available to manage hypoparathyroidism was suddenly recalled, leaving a few thousand HypoPara patients at severe risk. A year and a half later Natpara remains recalled with a recent update stating that it will be at least another year before this crucial medication returns to the market.
Meanwhile, many HypoPara patients find themselves working with endocrinologists who are unclear about how to treat this condition. Or encounter emergency departments that do not take their emergent needs seriously. Or perhaps interact with residents and students who are simultaneously overwhelmed by our condition, and excited about the “once in a lifetime” opportunity to see the effects of hypocalcemia.
Living with a rare health condition is challenging enough, having limited treatment options with no device available for self-monitoring makes it even harder.
But rare does not mean unknown, and it shouldn’t mean facing this condition alone.
In 2021, HypoPara Support & Advocacy Inc was founded to provide HypoPara patients and families a community of support, visibility, and a collective voice. Also to provide medical providers with easier access to information, additional education, and an understanding about the complexity of our condition.
While our inaugural board of directors has significant personal experience living with hypoparathyroidism, and extensive professional experience in several key fields, we cannot do this work alone. With teamwork and collaboration from our community and the medical providers who treat us, we can achieve so much more.
We invite you to check out our mission, vision, and values, sign up for our newsletter, and engage in our programs and events. Together, we can not only improve the lives of those living with hypoparathyroidism, but also cultivate an environment where we can thrive.
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