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Hypoparathyroidism Association Special Bulletin

Dear Friends and Associates,

A lot has been happening with the Hypoparathyroidism Association, and I am going to use this bulletin to try and bring everyone up to date on our activities and the things which are important to each of us.

2nd Annual Hypoparathyroidism Conference

The 2nd Annual Hypoparathyroidism Patient Conference will be held on June 8-9, 2007 in the Rosslyn Holiday Inn in Arlington, Virginia. Space will be limited to 90 people (as of February 18) and the remaining spaces could go fast, so it will be important to make your reservations early to assure yourself of a seat. We have 8 excellent speakers scheduled at this time, and are waiting to hear from others to line out the conference schedule. Specific details and information is available on our web site and can be accessed by clicking “HERE.”

Hypoparathyroidism Awareness Day

Last year we began our campaign to have January 5th designated as a national and International Hypoparathyroidism Awareness Day. After a slow start we have decided to change directions and concentrate on increasing awareness of Hypoparathyroidism on the local level. This will take the efforts of all of our members throughout the world to use the resources of our Association to help inform their personal doctors, local hospitals, local news media, and so forth about the disorder which has invaded our lives.

In the end we hope to increase awareness one patient, one doctor, one hospital at a time. If we achieve our ultimate goal of having an officially designated day for Hypoparathyroidism, that would be icing on the cake. If we do not, we will at least have increased awareness on a local level, which is where “YOU” live.

Hypoparathyroidism Association Pamphlets and Brochures

The five pamphlets and brochures prepared by Alice McGladdery and Phyllis Beller have been revised, reviewed and are available on our web site once again. These provide an excellent overview about Hypoparathyroidism and can reliably be shared with your physician and others to help them understand the disorder a little better. They can be accessed on our web site by clicking “HERE.”

Our Association has prepared a Patient Emergency information card which can be carried in your wallet. While it is not available on our web site yet, we can mail one to you upon request. You can request one by contacting our Association at the address below.

Medical Alert Jewelry

Our Association has advocated the use of Medical Alert Jewelry for our members for several years now, and our position has not changed. Medical Alert Jewelry used in conjunction with our pamphlets and brochures can help medical personnel in the event of a medical emergency.

In conjunction with our efforts to provide accurate and appropriate medical information we are working on an idea which we hope will provide a cost effective means of alerting medical personnel of your condition and provide information on how to handle a medical emergency associated with Hypoparathyroidism. We hope to be able to announce our progress at the conference on June 8, 2007.

Web Site Update

Our Web Site, as you are probably aware, has been stable since we switched s ISP and servers. The site is functional at this time and there are just a few things left to complete my wish list and to fix a few minor glitches.

What I wanted to point out here is that each member has the ability to access his member profile through the member Section of our web site, but in order to do so you need to use your User name and Pass Word. If you are unable to access the member section, you can request your user name and Pass Word be sent to you. Usually it is because you have moved, changed your name, or changed e-mail addresses.

Although we are not 100% secure, our Member Section does not contain any financial information, so it is of little interest to Internet predators. Our primary source of protecting your information is the use of a User name and Pass Word to access that information. Our web site will be made even more secure with some changes which will be implemented later this year.

I encourage all of our members to check the boxes in their profile information to allow us to share their contact and medical information with other members. This will enable you to utilize the search features on the web site and sort our member list according to criteria you set, such as all surgical onset HPTH patients, all parents, members in a certain state, and so forth. Only members who have consented to allow us to share their information will be included in those searches.

Use of E-mail Announcements

We have used Graphic Mail as our means of contacting our members, especially when an e-mail message is sent to several members at a time. It is a relatively method for me to communicate with targeted members on a variety of subjects. We will try and keep these messages to a minimum, and use this method for messages such as this one, or to notify the members when the newsletters are on-line.

Concluding Thoughts

We are expecting many great things for our Association this year. Our membership is growing at a faster pace, and we hope to be able to say at the end of this year that we have made a difference in the lives of at least some of them, and in your life. We would appreciate it if you would let us know what our Association has meant to you and your family.

Hypoparathyroidism Association, Inc. - 2835 Salmon, Idaho Falls, Idaho, 83406, United States