World Hypoparathyroidism Awareness Day: How an advocacy organization is encouraging change to improve the lives of patients and caregivers

World Hypoparathyroidism Awareness Day: How an advocacy organization is encouraging change to improve the lives of patients and caregivers

(BPT) – This June, the HypoPARAthyroidism Association, Inc. (HPA) is intent on making its mark within the rare disease community. In honor of World Hypoparathyroidism Awareness Day, an annual global awareness and education event observed on June 1, the nonprofit patient advocacy organization invites patients, caregivers and advocates to participate in a series of online events to raise awareness of a rare disorder that affects an estimated 77,000 to 115,000 people in the U.S. alone.

Hypoparathyroidism is a rare endocrine disorder characterized by deficient or absent parathyroid hormone (PTH) that causes lower than normal levels of calcium in the blood. PTH, which is produced by the parathyroid glands located in the neck, helps to regulate serum calcium levels in the body. It most commonly results from damage to or accidental removal of the parathyroid glands during thyroid surgery but may also be inherited or associated with other disorders.

Hypoparathyroidism can lead to a range of serious physical health complications, such as seizures, heart arrhythmias and kidney damage, and can also cause anxiety, depression and other mental health problems. As a result of these complications, patients living with hypoparathyroidism often experience a decreased quality of life.

For this year’s World Hypoparathyroidism Awareness Day, the HypoPARAthyroidism Association is hosting a Facebook Live on June 1 at 7 p.m. EST to touch on the disease prevalence, common patient diagnosis symptoms and experiences, and the need for treatment options.

The discussion will feature two leading endocrinologists in the hypoparathyroidism field, along with a patient who has been living with the disorder for over 20 years. The HPA hopes that audiences will take away an understanding of the quality-of-life impacts and emotional burden this disorder has on patients, and the urgent demand for new treatment care pathways.

As current available treatments for hypoparathyroidism – which include calcium and vitamin D supplements – only address the symptoms and not the underlying cause of the disease itself, the need for a shift to medications in the treatment paradigm is crucial.

Fortunately, there are hormone replacement medication therapies currently in development to restore normal PTH levels, with one being reviewed by the FDA. Approval of these treatments is essential to provide a safety net of options so that patients can better manage their disease and improve their quality of life.

To further broaden awareness beyond June 1, the HypoPARAthyroidism Association is excited to continue to host a series of webinars throughout June in recognition of their own hypoparathyroidism awareness month – featuring key health care professionals and company representatives to speak on a variety of relevant topics and therapy options on the horizon.

Reaching audiences through these online platforms helps the HPA to serve their mission to educate patients, physicians and the public about hypoparathyroidism, so that more research into finding new treatment options may be possible.

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