News 2011-2013

2013

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

 

2012

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.


Norman Baker MP opens art exhibition in support of HPTH UK

Norman Baker

Norman Baker, MP for Lewes, opened an exhibition of work that is being held in support of HPTH UK and includes paintings by HPTH UK Director Liz Glenister. On until 15th July at The Coach house Gallery, Alfriston, East Sussex.


Potential of Natpara in treating Adult Hypoparathyroidism

New findings from the double-blind, placebo-controlled Phase 3 REPLACE study of Natpara™ (recombinant human parathyroid hormone (rhPTH [1-84])) support the drug's therapeutic potential as the first parathyroid hormone replacement therapy for adults with hypoparathyroidism. The data was presented at ENDO 2012 annual meeting of The Endocrine Society. Full report |here|
   

Leap of love - Mum to do skydive for baby son with HPTH 

On 12th May, brave Scottish mother Lorraine Mathers will be diving out of a plane from 10,000 feet to raise funds for HPTH UK. Spurring her on will be the thought of her one year old son Reece who has hypoparathyroidism. Joining Lorraine will be Reece's aunts Michelle Roberts and Claire Clarke and his uncle, Thomas Muir, a real family affair! If you are in the area ofStrathallan Airfield (one hour from Edinburgh or Glasgow) do go along to give them your support. They hope to raise £400 each for HPTH UK through this and two family fun nights.  

HMRC declares HPTH UK a charity for tax purposes. 

This is great news for us. It means that we will be accepted on many more fundraising sites and you can tick the box to give us Gift Aid on any donations you kindly make. Oh - and the Pay Pal button is back >>>> 

 

2011

Winter newsletter 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

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

Our own lead 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.

   

Professor Fraser takes up post at UEA to lead new research institute .

Read more here

 

PTH clinical trial completed in UK

 

World Awareness Day on June 1st.

We launch our 'Living with Hypoparathyroidism'project to build a collection of patients' stories. This year the focus is on post surgical HPTH

 

Newsletter no 6 out now

Newsletter 6  - World HPTH Awareness Day edition


London Marathon

Liam Sale runs the London Marathon for HPTH UK and the Willow Foundation


BES 2011 Birmingham

HPTH UK exhibits at the Society for Endocrinology BES conferecne at the ICC in Birmingham.

 

Rare Disease Day 2011

HPTH UK attends receptions in Scotland and England.


   
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