Oral PTH 1-84 trial announced in UK
Professor Bill Fraser announced that a new trial using oral PTH 1-84 to treat hypoparathyroidism patients will be starting in January 2014, in Norwich. We are currently recruiting members who are interested in participating - see home page link for details.
SfE Clinical Update 2013
Hypoara UK was delighted to be invited to exhibit again at this conference , held 4-6th November in Bristol. Hypopara UK volunteers Harriet Lupton and Jeanette Jones manned the stand and met the UK's 200 young endocrinologists as well as speakers and conveners Dr Neil Gittoes, Prof Simon Pearce, Dr Jackie Gilbert. Many thanks to Claire Sale for her intentions and to Jo Grey for her invaluable transport assistance.
RCS publishes surgeons' outcome data
HPTH UK welcomes this news as an important step towards transparency and patient safety. Read more
USA patient survey reveals true extent of HPTH symptoms
The American Hypopara Association with NPS Pharma have carried out the PARADOX study, the largest and most comprehensive research to analyze the burden of Hypoparathyroidism. It reveals a collection of nearly 40 physical, cognitive, emotional symptoms. Read more
NPS to file license application for Natpara PTH 1-84
June 17th 2013: This what we've been waiting for since the REPLACE clinical trial in 2010! Findings presented by NPS at ENDO 2013 support the therapeutic potential of Natpara® as parathyroid hormone replacement therapy in patients with Hypoparathyroidism. They will be filing their U.S. Biologic License Application later this year. Read more
PTH clinical trial news
NPS Pharmaceuticals are to present data from the Natpara™ REPLACE Study and the PARADOX Study at ENDO 2013 in San Francisco next week Jume 15th. Read the Press Release here
World Hypoparathyroidism Awareness Day - 1st June 2013
We extend a very warm hello to all the Hypopara organisations around the world, to all those in the medical world who work to increase understanding about rare conditions and to everyone who supports us through their fundraising activities. We have been counting down to Awareness Day this year by posting patient stories on facebook and twitter. Visit our facebook page here or read the stories here on the website. We are adding to this collection all the time so if you would like to help raise awareness about your particular condition you can find out how to add your story here .
April: Important news: security breach
On Sunday 7th April our member registration list was hacked and data was posted on the Internet. This was immediately removed and all steps have been taken to ensure the security of our members. We were devastated by this but overwhelmed by the warmth and support we recieved from our members - thank you!
March: Society for Endocrinology BES 2013
HPTH UK were delighted to attend this year's endocrine conference in Harrogate where we will supported a session on parathyroid disease. To see the programme click here.
Feb: Rare Disease Day
February 28th 2013: 1 in 17 people will be affected by a rare disease at some point in their life. This amounts to approximately 3.5 million people in the UK. 75% of rare diseases affect children and 30% of rare disease patients will die before their 5th birthday. There are over 6,000 recognised rare diseases. Hypoparathyrodism is one of them. www.raredisease.org.uk
Latest NPS press release on PTH 1-84
October 2012: New data from REPLACE study show initiation of bone remodeling for Natpara®-treated patients with Hypoparathyroidism. To read the full report click here.