Parathyroid UK was founded by teacher and mother of 3, Liz Glenister, who was eventually diagnosed with brittle post surgical hypopara ten years after her operation for thyroid cancer at the age of 37. Read Liz’s story here. This had been such a traumatic decade that, no longer able to teach due to her unstable calcium levels, she decided to look for other patients to share experiences.
At the time hypoparathyroidism was barely known and information about it, for doctors or patients simply didn’t exist. Working on her dining table where she was to work for the next 20 years, Liz set up an online forum and overnight found nearly 100 fellow patients.
Realising there was a great need and an even greater lack of knowledge about hypoparathyroidism, she set about raising awareness, writing an information website, sending the link out to hospitals and health organisations and setting up mutual links. She identified and brought together a small team of highly regarded specialists, led by Prof Bill Fraser, who had an interest in bone and calcium who are mostly all still with us as our wonderful medical advisors today. With Dr Mo Aye she wrote the first ever patient information leaflet on hypoparathyroidism. She set up a small, dedicated committee of volunteers and in July 2005 Hypoparathyroidism UK (or HPTH UK) was born.
In 2006, Liz established Hypopara Awareness Day in the UK and started to encourage others to set up groups around the world. She campaigned globally to create a global voice for this rare condition, establishing a World Hypopara Awareness Day in 2010 and commissioning its own logo, produced by Isabel Wray. June 1st has been marked as World Hypopara Day ever since with patients from over 30 countries coming together online to celebrate every year. As this time Liz along with Gudrun Ruth Vidarsdottir and Helen Dahl Hansen also approached doctors internationally to talk about the need for a replacement parathyroid hormone. The REPLACE clinical trial began in 2010.
By now, we had become Hypopara UK, working hard to support patients, provide information and raise awareness around the world, bring people together and fundraise. We worked closely with our medical advisors to bring about research for better treatment. We became involved in groundbreaking studies on hypoparathyroidism, exhibited at conferences in the UK and internationally, and became recognised as a national patient organisation.
We also began to support hyperparathyroidism patients, at their own request. We worked on hyperpara research, provided information and set up another support group. Our patient information leaflet, written by Liz with Judith Taylor, on Primary Hyperparathyroidism was Highly Commended by the BMA. We contributed to the NICE guidelines on Primary Hyperparathyroidism published in May 2019.
In 2019, we rebranded as Parathyroid UK to bring everyone together under one umbrella and become the recognised organisation for all parathyroid conditions. We became affiliated to the Society for Endocrinology and the European Society of Endocrinology, attending conferences and engaging in the opportunities these liaisons offered, including the annual ESE Hypoparathyroidism Patient Forum. We also worked closely with BAETS whose new audit encouraged surgeons to declare numbers of operations and consider their impact. For the first time, were invited to speak at these conferences and with our membership of 6,000 strong we have become the ‘go-to voice for parathyroid diseases across Europe and beyond.’
In 2024, the SfE and BAETS began working with us, our advisors, endocrinologists, surgeons and industry partners on the long awaited UK Hypoparathyroidism registry and the Primary Hyperparathyroidism Working Party which we hope will both prove transformational in improving lives of patients. We are also very hopeful of the new parathyroid hormone treatments from Ascendis Pharma and Alexion ( the rare disease arm of Astra Zeneca).
In 2025, after 20 years, Liz stepped down as CEO but remains as our Founder Patron. In April, her successors and committee members Helen Hopkins and Lucy Weigall took over as joint CEOs, registering Parathyroid UK as a charity and setting up the first Board of Trustees. We are all very excited to see where they lead us at this time of great interest in parathyroid conditions and and new developments. We are all very proud to be part of this small but far reaching organisation and very thankful for the dedicated efforts of our medical advisors and all our volunteers, past and present, and healthcare professionals who work so hard on our behalf.