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The History of World Hypoparathyroidism Awareness Day

World Hypoparathyroidism Awareness Day, observed annually on June 1, was established through an unprecedented collaboration among patient leaders from around the world who shared a common vision -to unite the global hypoparathyroidism community and increase awareness of this rare endocrine disease.

The journey began in 2010, when representatives from the leading hypoparathyroidism organizations in the United States, United Kingdom, Europe, the Nordic countries, Germany (InSenSu), and the Middle East came together to discuss creating a truly international awareness day. At the time, awareness activities were held on January 5, a date originally chosen to commemorate Halla Ruth’s first PTH injection. While this date held deep personal significance, many organizations found that the timing immediately after the holiday season made fundraising, media engagement, and public participation difficult.

Through months of thoughtful discussion, leaders considered numerous possible dates. Suggestions included anniversaries of important conferences, birthdays of influential advocates and researchers, and dates connected to significant milestones in the history of hypoparathyroidism. Throughout these conversations, one guiding principle remained constant: the day should represent the entire global hypoparathyroidism community, rather than any one individual.

Among the strongest proposals was June 1, a date that coincided with the annual International Hypoparathyroidism Patient Conference held near Washington, D.C. Supporters believed this timing would maximize international participation, media attention, educational opportunities, and collaboration among organizations worldwide. June also provided sufficient separation from Rare Disease Day, allowing the community another opportunity each year to raise awareness about hypoparathyroidism and advocate for improved diagnosis, treatment, and research.

During the discussions, participants also recognized the extraordinary contributions of pioneers such as Dr. Karen Winer, whose groundbreaking work in parathyroid hormone replacement therapy transformed the lives of many patients and helped inspire the growth of patient organizations around the world. While several participants suggested honoring influential individuals through the awareness day, the consensus ultimately favored selecting a date that celebrated the collective efforts of the entire international community.

To bring the process to a close, the presidents and directors of the six established international hypoparathyroidism organizations held a formal vote. Although several dates remained under consideration—including April 2—the majority voted in favor of June 1.

In December 2010, James Sanders, President of the Hypoparathyroidism Association (USA), officially announced that June 1 would become World Hypoparathyroidism Awareness Day. The decision reflected the shared belief that awareness is strongest when organizations work together across borders, united by a common purpose.

Today, World Hypoparathyroidism Awareness Day serves as a global call to action. Each year on June 1, patients, families, healthcare professionals, researchers, and advocacy organizations come together to educate the public, improve understanding of hypoparathyroidism, advocate for better diagnosis and treatment, and support everyone living with this rare condition.

The history of World Hypoparathyroidism Awareness Day is a testament to international cooperation, patient leadership, and a shared commitment to ensuring that no one living with hypoparathyroidism feels alone. The collaborative spirit that established June 1 continues to inspire the worldwide hypoparathyroidism community today.