Early in 1994 the idea of an association for hypoparathyroidism patients was slowly hatched in Idaho Falls, Idaho. Later that summer, armed with names and addresses most of the medical schools in the United States the first issue of the Hypoparathyroidism Newsletter was written and sent out to almost 100 people, including the medical schools and my captive family. The newsletter, which has been published nearly uninterrupted since September 1994, evolved into what is now known as the Hypoparathyroidism Association, Inc., with membership worldwide exceeding 3600 members in 69 countries.
For the first few years we existed as printed, self funded, publication, which ranged from our beginning issue of four pages to issues exceeding thirty pages. We were fortunate to find an internet service provider and web designers who were willing to host a web site for our association. Our latest website going live in October of 2010.
At the same time, it was realized we we needed to take the steps necessary to become incorporated in the State of Idaho as a non-profit corporation, and to seek recognition from the Internal Revenue Service as tax-exempt under title 501(c)3 of the IRS Code. All of this was achieved in December 1998.
Prior to the summer of 1994 there was no recognized association for hypoparathyroidism patients in the world. Since then, similar associations have been founded by members of our association in the United Kingdom, the Nordic Countries and the European countries.
A separate association in Germany, InSeNSU, was formed independently of our Association and is in no way related to us but is equally helpful to those with hypoparathyroidism.
In the end we hope to be able to say we have made a difference, as we strive to help hypoparathyroidism patients worldwide realize, often for the first time in their lives, they are people with a disease, and not just a disease with people. They are not alone any more.