November
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.
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
September
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
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.
August
Read more here
July
June
We launch our 'Living with Hypoparathyroidism'project to build a collection of patients' stories. This year the focus is on post surgical HPTH
May
Newsletter 6 - World HPTH Awareness Day edition
April
Liam Sale runs the London Marathon for HPTH UK and the Willow Foundation
HPTH UK exhibits at the Society for Endocrinology BES conferecne at the ICC in Birmingham.
February
HPTH UK attends receptions in Scotland and England.
BBC Newsnight report highlights concerns about GP commissiong and rare diseases
BMJ:'Calcium supplements lead to increased risk of heart disease.'
Diabetes self testing 'improves glycaemic control'. When will HPTH patients be allowed to self test?
Scottish member Natalie Love climbs Ben Lomond for HPTH UK.
First Hypoparathyroidism and Thyroid Awareness and Information meeting,Nottingham.
'Rare Is Common' - recommendations for rare diseases in Chief Medical Officer's Annual report 2009 ( pages 39-45)
HPTH UK recieve a grant from the Society for Endocrinology towards the printing and distribution costs of the Patient Information Leaflet.
March
HPTH UK attends their first BES conference in Manchester and launches Leaflet
First International Thyroid cancer audit takes place
First Patient Information Leaflet on Hypoparathyroidism by HPTH UK and it's Clinical Advisory Team is produced in conjunction with Society for Endocrinology.
28th Feb 2010 - see UK events
January
This year we are launching our new website to mark our Awareness Day - we hope you like it! Please help us to raise awareness about Hypoparathyroidism by sending the link to others (like your doctor maybe?) and asking them to do the same ... and so on...
First UK clinical trial on PTH 1-84 begins !! October
New 'Quality of Life' questionnaire for all HPTH patients
New alliance of rare disease advocacy groups
Stem cell success points to regeneration of parathyroid glands
New service improves treatment for thyroid cancer patients February
HPTH UK will be attending the second annual Rare Disease Day to be celebrated on 25 February 2009 in countries throughout Europe. In the UK, Rare Disease UK in collaboration with the Genetic Interest Group is hosting three events in England, Scotland and Wales to raise awareness of rare disorders and the impact that they have on patients’ lives among the media, decisions makers, health professionals and the general public.
This year we were contacted by the media. Director Liz Glenister was interviewed in a BBC West Midlands radio show along with Dr Nick Shaw, HPTH patient Sonia Williams and our Admin Officer, Caina Cuthbertson. We were also invited to appear in the Woman's Own magazine and member Sue Baskett bravely stepped up to be interviewed about her own HPTH experiences.
Our second year - we sent out posters to all our members, our advisors and related organisations. We were also contacted by health centres and endocrine departments who were kind enough to choose to highlight Hypoparathyroidism on their display boards.
The first World Hypoparathyroidism Awareness Day was held on January 5th 2007. This date was originally chosen as HPTH World Awareness Day because it was on that day, in 1994, that a 6 year old girl in Iceland, became the first child in the world to be treated with replacement parathyroid hormone (PTH) - our missing hormone.In the UK we marked the day by getting it listed on the NHS Health Events calendar and having a poster designed which was sent out to members as part of a fundraising drive. In August of this year, we appeared in the Daily Mail as part of an article on hormonal conditions where HPTH UK member Jill Dewsbury kindly shared her experiences.
Hypoparathyroidism UK website was selected by the Wellcome Library for inclusion in their Health & Medicine UK Web Archive where it will be kept for preservation.
Read all our newsletters here(member log in required)
The HPTH UK News, comes out twice a year in May and November.
It is free to members and is delivered directly to your inbox or , for postal members, your letterbox.
Printed copies are availabe for £3.50 incl p&p from Claire or call 01342 316315. Discount available for bulk orders.
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