News 2005-2010

2010

August

BBC Newsnight report highlights concerns about GP commissiong and rare diseases

BMJ:'Calcium supplements lead to increased risk of heart disease.'

June

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.

April

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.

BES 2008 - Manchester

HPTH UK attends their first BES conference in Manchester and launches Leaflet

First International Thyroid cancer audit takes place


Hypopara UK publishes the first ever patient leaflet on Hypopara

First Patient Information Leaflet on Hypoparathyroidism by HPTH UK and it's Clinical Advisory Team is produced in conjunction with Society for Endocrinology.

 

Rare Disease Day report - Scotland

28th Feb 2010 - see UK events

 

Awareness Day

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...

 

2009

 

First UK clinical trial on PTH 1-84 begins !!

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

Rare Disease Day

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.

 

Awareness Day

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.

 

2008 

Orphanews Europe


Awareness Day

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.

 

2007

Awareness Day

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.

 

2006

Wellcome Library

The Hypoparathyroidism UK website were honoured to be among the first to be selected by the Wellcome Library for inclusion in their Health & Medicine UK Web Archive where it will be kept for preservation. We opted not to include the forum to preserve our members' privacy.


2005

HPTH UK launch

We were delighted to launch Hypoparathyroidism UK on July 15th 2005. On this date the website and online forum went live, along with sister group Thyroid Cancer Support UK.


   
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