Group Educates Americans About Hypoparathyroidism and Supports Patients with Rare and Complex Endocrine Disorder IDAHO FALLS, Idaho, May 29, 2013 /PRNewswire/ -- The Hypoparathyroidism Association, the first non-profit group in the U.S. advocating exclusively for patients living with a rare disorder called hypoparathyroidism, is pleased to announce June 1 is the third annual World Hypoparathyroidism Awareness Day. This observance encourages patients, physicians and caregivers to increase awareness of hypoparathyroidism and the need for more education, improved diagnosis, and new, long-term treatments for this rare and complex disorder. The Association will also host its 7th International Hypoparathyroidism Patient Conference from June 6-8 in Rockville, Maryland to bring together the hypoparathyroidism community in an effort to discuss scientific advances in the field and offer guidance on patient concerns. Patients or interested parties can visit the Hypoparathyroidism Association website, www.hypopara.org, to become a member or register for the conference.
Hypoparathyroidism is characterized by a number of physical and mental symptoms, including uncontrollable muscle spasms and cramps, tetany, seizures, fatigue, anxiety, and depression. The most common cause of hypoparathyroidism is a consequence of surgery on the thyroid gland or parathyroid glands, and/or surgery or trauma to the neck, although it does occur from non-surgical causes. Because hypoparathyroidism is so rare, many physicians often do not fully understand the disorder and fail to diagnose it in a timely manner, if at all. There is currently no FDA-approved replacement hormone for hypoparathyroidism, and it is the last remaining endocrine disorder without such a treatment.
"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," said Jim Sanders, president of the Hypoparathyroidism Association. "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."
Over the past seven years the patient conference has convened members from the global hypoparathyroidism community to discuss scientific advances and offer guidance on patient concerns. Discussions from a notable list of international experts from such esteemed institutions as the Mayo Clinic, Massachusetts General Hospital, McMaster University, and Columbia University highlight this year's program. In addition, officials from the National Institutes of Health will also speak alongside patients and their caregivers.
"The International Patient Conference of the Hypoparathyroidism Association is an important annual event that brings together patients, their doctors, and the investigative teams that are conducting ground-breaking research into this disorder. The conference gives patients an opportunity to learn about the latest advances and also about ongoing research studies for which they may be eligible," said Dr. John Bilezikian, Professor of Medicine and Pharmacology, Chief of the Endocrinology Division and Director of the Metabolic Bone Diseases Program at the College of Physicians & Surgeons, Columbia University.
In 2011, the Hypoparathyroidism Association, in accordance with other related organizations, designated June 1 as World Hypoparathyroidism Awareness Day to increase awareness about this rare condition. The goal of the observance is to encourage members of the organization to act as ambassadors and spread the word about hypoparathyroidism and influence their local communities to formally recognize the day. By celebrating this awareness day, the Hypoparathyroidism Association believes it will generate more opportunities to educate the public and healthcare providers about the condition.
To learn more about hypoparathyroidism and World Hypoparathyroidism Awareness Day, or to become a member of the Hypoparathyroidism Association, please visit: www.hypopara.org.
Hypoparathyroidism is a rare endocrine disorder in which the body produces insufficient levels of parathyroid hormone, the principal regulator of calcium and phosphorus. When the body has too little parathyroid hormone, blood calcium levels drop and phosphorus levels increase, which can cause a number of physical and mental symptoms, including uncontrollable muscle spasms and cramps, tetany, seizures, fatigue, anxiety, and depression. There is currently no FDA-approved replacement therapy for hypoparathyroidism, which is currently managed with large doses of calcium supplementation and active vitamin D therapy to raise the calcium levels in the blood and reduce the severity of symptoms. Over time, calcium may build up in the body and result in serious health risks, including calcifications in the kidneys, heart or brain. Hypoparathyroidism is believed to affect as many as 100,000 Americans.
About the Hypoparathyroidism Association
The Hypoparathyroidism Association, Inc. is a voluntary, non-profit organization dedicated to improving the lives of people with all forms of hypoparathyroidism. The Association was founded in 1994 in Idaho Falls, Idaho and has evolved into an organization with more than 3,800 members from 69 countries around the world. The main objective of the Association is to maintain a worldwide network of support, and promote public, as well as professional, awareness of this disorder through educational portals including a website, quarterly newsletter, periodic conferences and webinars; and fundraising to support research. Additional member services include access and information for clinical trial programs, one-on-one phone support and an interactive web forum that facilitates a community among the membership. Five international Associations, independent of ours, have been organized in the United Kingdom, the Nordic Countries, Germany (INSENSU), Bahrain, and the European Community.
SOURCE The Hypoparathyroidism Association, Inc.
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