James Sanders, father of five sons with the rare disease of Hypoparathyroidism, felt often alone and ill-equipped to cope with the challenges the disease brought to thier daily lives in Idaho Falls, Idaho. In 1994, through a study at the National Institutes of Health (NIH), he first met another patient with this disease besides his children. It was then that the idea for an association dedicated to hypoparathyroidism patients was hatched. That year He began with a newsletter for both patients, family, and healthcare providers.
Now, with twenty plus years of hard work, we have grown a worldwide membership exceeding 5,000 members in 70 countries. We continue to run our newsletter and have since launched a website as a hub for patient support in partnership with doctors and researchers. We host an annual conference in conjunction with Thyca(Thyroid Cancer Association), to include speakers and attendees from across the globe. Our conferences further bring the medical and patient communities together for mutual exchange on how to treat and live with such a difficult disease.
In 1998, the Association incorporated as a nonprofit, with an all-volunteer board, and became a tax-exempt 501(c)(3) organization. As we’ve grown, we have excitedly supported numerous other associations’ creations in other countries around the globe. I am delighted to say, with our collective efforts, we have and will continue to make a difference in the lives of those touched by hypoparathyroidism. In the face of this disease, we now need not feel alone. Through the Association and the work, we continue to push and grow, patients like me and my sons now have better access to information and research, skilled and knowledgeable doctors, and a robust, supportive, and understanding community. As I surmised back in 1994, clearly, together we can make a difference.
Jim Sanders, Founder, Board Member Emeritus
HypoPARAthyroidism Association, Inc.
Note from the President: A new beginning
As the President of this wonderful organization, I welcome you to our site! Our goal is to improve the lives of those who have hypoparathyroidism and their caregivers. That has not changed since the start with James, but we are beginning to reach out farther than before. We are in need of volunteers to help us coordinate all the different avenues we would love to explore. Continue and build on our involvement with NORD, Global Genes, and more. Our website has a plethora of ways to do just that. Please take the time to enjoy all the different avenues and be sure to become a supporting member. That is our means for keeping all this going. Make sure you sign up for emails as that is our new way to become a member! Together we will shoot for the end of HypoParathyroidism!
President, and Vice-Chair of Board of Directors
Non-profit Tax EIN: 82-0505424
This information is provided for educational purposes only. It should not be used for diagnostic or treatment purposes. If you wish to obtain more information about this disorder, please contact your personal physician.