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Welcome to HPTH UK

We are the only UK charity providing advice, information and support to people affected by Hypoparathyroidism and other rare parathyroid conditions.
 Living with Hypoparathyroidism (patients' stories)Visit our
Members' Forum 

 
Download a patient information leaflet
 

 

 

 

Latest news 

Important news: security breach

We are very sorry to inform you that on Sunday 7th April our member registration list was hacked and data was posted on the Internet. Although now removed, members need to take remedial action. Please read the email you have been sent.

Society for Endocrinology BES 2013

HPTH UK are delighted to be attending this year's endocrine conference in Harrogate where we will be supporting a session on parathyroid disease. To see the programme click here

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

New patient stories 

NPS have published a brochure of patient perspectives about living with Hypoparathyroidism called 'Voices of Hypoparathyroidism: You are not alone'. To read the stories click here. To read stories we have collected from HPTH UK members click here.

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|
   

World Hypoparathyroidism Awareness Day - 1st June

Today we join with HPTH groups around the world to raise awareness about the realities of living with Hypoparathyroidism. To mark the day, we are publishing a new collection of patients' stories to add to our  'Living with Hypoparathyroidism' project which was launched last year to focus on post surgical hypoparathyroidism. This year, the spotlight is on all the other forms of hypoparathyroidism - idiopathic, autoimmune, familial and more. We hope that these stories will help doctors, students, and our families and friends understand more about this conditon. We still need more stories so if you would like to help raise awareness about your particular condition you can find out how to add your story 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 of Strathallan 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.  

Missed the day? Don't worry - you can still sponsor Lorraine and her family on our Bmcharity page here

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 >>>> 

 

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. If you are an HPTH UK member you can also visit our online forum or facebook group.

We do our best to respond to emails as soon as possible but we are a very small team of volunteers running a busy organisation so please be patient - thank you.

HPTH UK is a national voluntary organisation and is recognised and recommended by the British Thyroid Association , The British Association of Endocrine and Thyroid Surgeons and the Society for Endocrinology

We are also a member of Genetic Alliance UKRare Disease UK and National Voices

HPTH UK is the operating name of Hypoparathyroidism UK, a small charity recognised by HMRC for tax purposes © 2005-2013 HPTH UK


 


   
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