Latest news

HPTH UK awarded SfE grant

Our grateful thanks to the Society for Endocrinology who have awarded us a Patient Support Grant of just over £3,000. As we don't recieve any other funding, and rely on donations and fundraising to keep going, we are very happy indeed to recieve such a generous award - thank you SfE, what a lovely start to the New Year!

HPTH UK NEWS No. 7 is out now!

The Winter edition of the newsletter is now available. It is sent free to members online and postal members recieve a printed copy. If you are not a member you may order a printed copy for £3.50 (incl p&p) from Claire.

PTH 1-84 Clinical trial update

Nov 2011: Phase 3 REPLACE study of NPSP558 in Hypoparathyroidism - this trial was run by Professor Fraser in Liverpool and HPTH UK members took part. The preliminary analysis of the trial results has now been released and NPS Pharmaceuticals have announced positive top-line results. "These positive results from our Phase 3 REPLACE study are an important milestone and bring us one step closer to our goal of providing hypoparathyroidism patients with a much-needed replacement therapy," said Francois Nader, MD, president and chief executive officer of NPS Pharmaceuticals. NPSP558 now has orphan drug status and could become the first replacement therapy for hypoparathyroidism; the company is planning for U.S. marketing submission in 2012 . Read more here

Professor Fraser leads new research institute

Sept 2011: Our own advisor, Professor Bill Fraser, a leading international authority on metabolic bone disease, has been appointed to a new post at the University of East Anglia (UEA) and the Norfolk and Norwich University Hospital (NNUH) where he will head a new institute for research into bone and muscle disorders. It is hoped that this will become a world centre of excellence. Read more

Discovery of parathyroid glow promises to reduce endocrine surgery risk

New research from Vanderbilt Universuty USA shows that the parathyroid glands – four small organs the size of grains of rice located at the back of the throat – glow with a natural fluorescence in the near infrared region of the spectrum.

This unique fluorescent signature was discovered by a team of biomedical engineers and endocrine surgeons, who have used it as the basis of a simple and reliable optical detector that can positively identify the parathyroid glands during endocrine surgery.

Professor Fraser, lead advisor to HPTH UK, said 'I think your members would be very interested to read this one. Fascinating, and I hope a way of preventing a significant amount of hypoparathyroidism in future. Read the full article here.

'Living with Hypoparathyroidism' Project

The 'Living with Hypoparathyroidism' project was launched on June 1st to mark World Hypoparathyroidism Awareness Day. This year we are focusing on surgery and the project aims to build a collection of stories from patients to raise awareness about living with post surgical hypoporathyroidism. (We will be focusing on the genetic forms of HPTH will be next year). Find out how to add your story here. Read patient stories or watch them on YouTube

How can we help you?

Are you or your family affected by HPTH? Are you a doctor, scientist or student? Whatever your interest in Hypoparathyroidism, we will do our best to help.

We work hard to improve the quality of life for those living with HPTH by

providing support and a place of contact for our members via our forum and telelphone helpline, newsletters and (coming soon) regional groups
providing information and education via our website and leaflets
raising awareness about HPTH to the public, patients & health professionals
campaigning for better treatment
promoting new research

Please look around this site which is being added to all the time. If you still have any questions about parathyroid matters or about HPTH UK that haven't been answered here or if you have any suggestions or comments about the site please get in touch. We are always happy to help where we can and go that extra mile but we are small in number so please be patient when waiting for a reply.

HPTH UK is a charitable voluntary organisation recognised by the Society for Endocrinology and the British Thyroid Association and is a member of Genetic Alliance UK and Rare Disease UK . Tax registration number applied for.