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
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.
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.
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.
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 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.
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|
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 .
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
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 >>>>
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
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 UK, Rare Disease UK and National Voices.
12 /11/2012MHRA has suspended the licence for Teva and Numark levothyroxine 100 mcg tablets. For more information CLICK HERE or contact your GP
Thyroid Cancer Support UK
Visit our sister forum forall your questions about Thyroid cancer.
Top | Home | Hypoparathryoidism | Resources | News | Members | Disclaimer | Privacy | Copyright |