Hypoparathyroidism Association Kicks Off Inaugural Membership Drive in Recognition of World Hypoparathyroidism Awareness Day
IDAHO FALLS, Idaho, June 1, 2012 /PRNewswire/ — The Hypoparathyroidism Association, the first non-profit group in the U.S. that advocates exclusively for patients living with a rare disorder called hypoparathyroidism, has kicked off its inaugural membership drive in recognition of today’s second annual World Hypoparathyroidism Awareness Day. The observance encourages patients, physicians, and caregivers to spread the word about hypoparathyroidism, shedding light on the need for greater education, more timely diagnosis, and research into new, long-term approaches for this complex disorder. Patients can visit the Hypoparathyroidism Association website, www.hypopara.org, to become a member.
Hypoparathyroidism is a rare endocrine disorder that is believed to affect as many as 100,000 Americans. Initially identified by low serum calcium (hypocalcaemia) along with a low parathyroid hormone level, 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 today 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, 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.
“As the premiere patient advocacy group in the U.S. dedicated to the unique needs of hypoparathyroidism patients, we understand first-hand how difficult it is to live with this rare and complex disease,” said Jim Sanders, president of the Hypoparathyroidism Association. “Growing our membership is an important goal that will enable us to continue to advocate for the rights of patients living with hypoparathyroidism and provide valuable support to help ease the burden of living with this rare and complex disorder.”
The membership drive commences on June 1 and continues with activities throughout the year, including the organization’s upcoming patient conference being held from June 7 – 9 in Rockville, Maryland. For the sixth year, the patient conference will bring together the hypoparathyroidism community in an effort to discuss scientific advances in the field 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, the Children’s Hospital of Philadelphia, 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. To register for the conference, please visit www.hypopara.org.
“The annual patient conference is an important venue for the hypoparathyroidism community – patients, caregivers, experts, and government officials – to increase the education base for this rare disorder,” said Dr. Bart Clarke, a member of the Hypoparathyroidism Association’s Medical Advisory Board and treating physician at Mayo Clinic in Rochester, Minnesota.
Hypoparathyroidism is a rare endocrine disorder in which the body produces insufficient levels of parathyroid hormone, which helps the body regulate the minerals calcium and phosphate.
As a result, calcium levels drop, while the amount of phosphorus, another mineral, increases in the body. There is no FDA-approved hormone replacement treatment for hypoparathyroidism, which is currently managed with large doses of calcium and vitamin D therapy to raise blood calcium levels.
“Due to the complex nature of this disease and limited treatment options, long-term patient care is a concern. Over time, calcium may build up in the body and result in serious health risks, including calcifications in the kidneys, heart or brain,” added Dr. Clarke.
The Hypoparathyroidism Association, in accordance with other related organizations, designated June 1, 2011 as the first Hypoparathyroidism World 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 creating 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 World Awareness Day, or to become a member of the Hypoparathyroidism Association, please visit: www.hypopara.org.
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 3,600 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.