On the 15th July 2025 we celebrated our 20th anniversary!
In 2005…
- Hypoparathyroidism was largely unknown.
- The risk of post surgical hypoparathyroidism was 27% – 30%
- There was no information for medics or patients, no research, guidelines or clinical trials and no patient support.
- In primary hyperparathyroidism, patients were told to watch and wait and refused surgery over age 50.
- Patients’ views weren’t acknowledged and both conditions were poorly understood adn mismanaged.
Then we came along!
- we brought together interested health professionals and approached professional societies and industry partners and campaigned relentlessly for better care.
- we set up World Hypopara Awareness Day to give us a louder voice and bring together patients from over 30 countries around the world.
- we wrote the first ever patient information and provided patient information and support via our highly acclaimed website, helpline, leaflets and online patient support groups.
So, thanks to patient driven awareness and the commitment of our dedicated medical advisors with support from our industry partners……
In 2025 ….
- a great deal of interest now exists in all parathyroid conditions with considerable research having been carried out over the last ten years.
- parathyroid hormone treatments have been developed and trialled.
- greater recognition of patients’ poor quality of life and unmet needs with work is underway to address these properly via a UK Registry for hypoparathyroidism and a Working Party for primary hyperparathyroidism.
- the risk of post surgical hypoparathyroidism is down to 7-10%.
- we continue to raise awareness to health professionals at conferences, educate at training events via webinars and our website and we regularly participate in research.
…..there is hope of a better future!
If you’d like to know what else we’re up to please visit our website
If you would like to help us celebrate our achievements please donate here
Thank you