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:
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.