Conference Reports 2022
Society for Endocrinology (SfE) Endocrine Academy Birmingham, April 2022 Jane & Steve Compton Jane writes: We had a brisk and busy first day with lots of interest in our leaflets and our poster below: ‘How… [Read More]
Latest News
Hypopara Patient Forum summary
The European Society for Endocrinology (ESE) have produced an excellent poster summarising data from the 1st Hypoparathyroidism Patient Forum – summary, a major global event which was held online in March and presented by patient… [Read More]
National audit on hypopara published
Our national audit on the management of chronic hypoparathyroidism is now out now in print, in the latest issue of Clinical Endocrinology. Findings show a clear need for improvement, supporting the findings of the GIRFT… [Read More]
Positive results on new drug from Amolyt
Amolyt Pharma have announced positive results from the second patient cohort of their Phase 2a Clinical Trial investigating AZP-3601 as a potential treatment for hypoparathyroidism . Amolyt say “We’re excited to be one step closer… [Read More]
BAETS 2022
We were delighted to attend BAETS 2022 in person at last. Huge thanks to our two fantastic volunteers Lucy Weigall and Caroline Dow who spent two days representing hypopara and hyperpara patients at the British… [Read More]
Natpar to be discontinued
Oct 4th 2022. Takeda will be discontinuing Natpar globally at the end of 2024. Supply for current patients will be maintained until then and beyond until stock is depleted. Having worked since 2009 to get… [Read More]
Parathyroid UK publicises One Alpha shortages
Today, in The Guardian ‘Rare Disease’ section, we call for action on the current shortage of One Alpha. Here it is in full in case you missed it. Many thanks to all our medical advisors,… [Read More]
Shortages of One Alpha
Following reports from members of difficulty accessing One Alpha (Alfacalcidol) medication we have circulated the following information regarding temporary shortages due to problems with manufacturing supply. We can’t say exactly when these will be resolved… [Read More]
UK National Chronic Hypoparathyroidism Audit
We are very proud to announce the publication of our UK national audit of endocrine departments which reveals the extent of the clinical need for improvements in the routine care of those with chronic hypoparathyroidism…. [Read More]
July is Parathyroid Disease Awareness Month
To mark Awareness Month we have added a new page to the website of patient videos to highlight the challenges of living with Primary Hyperparathyroidism. First, we bring you a compelling slideshow by patient expert… [Read More]