Town Hall Meeting, Events Mark World Hypopara Awareness Day
From buying virtual lemonade drinks to participating in a town hall meeting, the hypoparathyroidism community is poised to mark World Hypopara Awareness Day, observed each June 1.
Patients, caregivers, and advocates worldwide are invited to participate in the event aimed at heightening awareness among the general public, as well as policymakers, public authorities, industry representatives, scientists, and health professionals.
Awareness and education are crucial for greater recognition, and better diagnosis, understanding, and management of hypoparathyroidism, a disease thought to affect some 200,000 individuals across the U.S., Europe, Japan, and South Korea, with at least 80,000 in the U.S. alone, according to the HypoPARAthyroidism Association.
“Similar to many rare disorders, hypoparathyroidism is not fully understood, which translates to delayed diagnosis that leaves patients without the expert care they need to overcome symptoms and remain productive members of society,” Jim Sanders, the association’s founder, said in a press release.
“With this in mind, we celebrate World Hypoparathyroidism Awareness Day and use it as a platform to serve our organization’s mission to educate patients, physicians, and the public about this rare disorder, so that more research into finding new treatment options and ultimately a cure may be possible,” Sanders added.
Disease awareness among the general public is limited, but particularly striking is hypoparathyroidism’s low profile among healthcare professionals, the organization said. This lack of knowledge, too often, has caused misunderstandings and harrowing emergency room experiences.
The nonprofit organization has a host of activities and events planned for Awareness Day, including a virtual lemonade sale. To raise at least $5,000 for research, the association is inviting participants to “buy” a lemonade beverage such as “grandma’s lemonade” or a “kid stand lemonade.” These sales — actually, donations — don’t result in the receipt of drinks, although the organization will send recipes.
Also on June 1, the organization will present an hourlong town hall meeting starting at 7 p.m. ET. The all-inclusive interactive webinar will feature the association’s chairman, Bob Sanders, who will discuss the organization’s current and future efforts. A moderator will field live questions. Send questions to [email protected], and go here to register.
The association is also providing patient videos and a downloadable “Voices of Hypopara Fact Sheet” for sharing on social media. The fact sheet condenses results from a survey the group conducted, with support from Ascendis Pharma, highlighting the experiences of patients in the U.S.
“Because the symptoms aren’t easy to see, I often feel like no one understands. I feel very isolated,” said one survey participant.
Symptoms include weakness, muscle cramps, abnormal sensations such as tingling and burning, memory loss, impaired judgment, and headache.
Survey results showed that 80% of the 146 patients who responded had contracted the disorder following neck surgery, and nearly half had more than five doctor visits before being correctly diagnosed.