• Skip to primary navigation
  • Skip to main content
  • Skip to footer
Parathyroid UK Homepage

The national voice for people living with parathyroid conditions

Helpline 01342 324091
  • Donate
  • About us
    • Our Teams
      • Board of Trustees
      • CEO & Management Committee
      • Support Team
    • Our Medical Advisors
    • Our history
    • Annual reports
    • Contact Us
  • Shop
  • News
    • Latest News
    • Newsletters
  • Home
  • Hypoparathyroidism

    Hypoparathyroidism

     

    Read our Quick Guide to Hypopara

    Suspect you have hypopara?

    Recently been diagnosed with hypopara?

    Find out more about hypopara

    What is hypopara?

    Causes of hypopara

    Diagnosis of hypopara

    Symptoms of hypopara

    Treatment of hypopara

    Related reading

    Thyroid cancer

    Thyroid surgery

    Related conditions

    CaSR

    • A quick guide to hypopara
    • Suspect you have hypopara?
    • Recently been diagnosed?
    • Causes
    • Diagnosis
    • Symptoms
    • Current Treatment
    • New Treatments
    • Thyroid cancer
    • What you should know before – and after – thyroid surgery
    • Calcium-sensing Receptor (CaSR)
    • Related conditions
  • Living with Hypopara
    • Get support
    • Self Help Guide
      • Understanding the basics
      • How to manage your calcium levels – practical steps
      • Understanding your tests
      • Understanding your medication
      • Diet in Hypoparathyroidism : general guidance
        • Diet in Hypoparathyroidism Part 1 : Calcium
        • Diet in Hypoparathyroidism Part 2 : Phosphate
      • Exercise
      • Employment and Benefits
      • What else can I do to help myself?
    • For Women
      • Your hormones and calcium
      • For our hypopara mums
      • Your pregnancy, birth & breastfeeding journey
    • For Parents
      • Fertility and starting a family
      • My baby has hypoparathyroidism
      • Looking after children with Hypopara
    • Emergency ID items
    • Patient stories
    • Hypopara patient videos
    • Hypopara patient podcasts
  • Hyperparathyroidism
    • Support
    • Your parathyroid glands
    • Primary Hyperparathyroidism
    • Secondary Hyperparathyroidism
    • Tertiary Hyperparathryoidism
    • Parathyroid cancer
    • Hyperpara Patient Videos
    • Patient stories
  • Get Involved
    • Become a member
    • Clinical Trials
      • Current clinical trials & studies
    • Donate
    • Buy a Gift
    • Shop
    • Fundraise for us
    • Sponsor a fundraiser
      • World Hypopara Awareness Day 2022
    • Support Groups
  • Resources
    • Patient information leaflets & other publications
    • Support Groups
    • Emergency ID items
    • Find a Doctor
    • Guidelines
    • Key Research on Hypoparathyroidism
    • Newsletters
      • World Hypopara Awareness Day 2021
    • Key Research on Primary Hyperparathyroidism
    • Useful links for patients
    • European and Global Hypopara organisations
    • Health Organisations
  • Join us
  • Medical Professionals
    • Our Medical Advisors
    • Guidelines
    • Clinical trials & studies
    • Order resources
    • Learning resources for healthcare professionals
      • Hypoparathyroidism for professionals
      • Hyperparathyroidism
      • Patients’ lived experiences
    • For Endocrine Nurses
    • For GPs

Our history

From our Chief Executive:

‘I founded Hypoparathyroidism UK in 2005 after my own experience of living for many years with undiagnosed brittle Hypoparathyroidism following surgery for thyroid cancer in 1992.

I found living with a rare disease isolating and frightening. It was difficult to find any information and many doctors had simply never heard of the condition before. I didn’t want anyone else to go through the same terrifying experience as me. I wanted people to be able to find each other and to have access to information and support that simply wasn’t available then.

So I set up a forum and wrote an information website and set about raising awareness about this little known condition and gathering together a team of highly regarded specialists.

Eventually we became HPTH UK and later Hypopara UK and by then I was supported by a small, dedicated committee of patients  who worked hard to support patients, provide information and raise awareness around the world, bring people together and fundraise. We worked closely with our medical advisors to bring about research for better treatment. We became involved in groundbreaking studies on hypoparathyroidism, exhibited at conferences in the UK and internationally, and became recognised as a national patient organisation.

Five years ago we also began to support hyperparathyroidism patients, at their own request. We worked on hyperpara research, provided information and set up another support group.  Our patient information leaflet on Primary Hyperparathyroidism was Highly Commended by the BMA. We contributed to the NICE guidelines on Primary Hyperparathyroidism published in May 2019.

Today we have over 2,500 members and are well known in the endocrine world so we are delighted, in 2019, to bring everyone together under one umbrella, Parathyroid UK.

I am very proud to be part of this small but far reaching organisation and I am deeply committed to its aims. I never fail to be moved by the stories of the patients who contact us and by the efforts of the volunteers and healthcare professionals who work so hard on our behalf.

We’ve come a long way since 2005 but it is my dearest wish that with your continued support we can make the future for all parathyroid patients much brighter.

And finally, it was a great honour to win the Small Charities Coalition and Markel ‘Britain’s Best Volunteer Award 2016’. You can see the video they made about us below. Thank you to everyone who so kindly voted for me and in doing so helped to raise awareness about parathyroid conditions and about our small but very special charity.

With my very warmest wishes,

Liz Glenister

 

We are proud to be affiliated with:

ESE logo

Our information is also endorsed by:

BMA logo
British Thyroid Association
World Hypopara Awareness Day logo

We are members of:

Rare Diseases UK logo
Genetic Alliance UK
National Voices logo

Footer

Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

Let’s not forget that 75% of patients living with #hypoparathyroidism suffer a double whammy post thyroidectomy when they become hypothyroid AND hypoparathyroid. #WorldThyroidDay2023 twitter.com/physorg_…

reply retweet favourite
10:22 pm · 25th May 2023
Twitter
BTF Thyroid
BTF Thyroid
@britishthyroid

Peri/menopause added to an existing thyroid condition can make it a challenging time for some midlife women. We’ve worked with Prof Annice Mukherjee on some new resources to help Read our article ↘ btf-thyroid.org/thyr… #WorldThyroidDay #menopause #perimenopause #thyroid pic.twitter.com/qIKS…

reply retweet favourite
10:10 pm · 25th May 2023 ·
Retweeted by Parathyroid UK
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

“The causes of death in 12 patients appeared to be unrelated to HP but we found a high prevalence of chronic organ damages/comorbidities related to it in this group. Less than 25% documented HP correctly in the discharge letters, which indicates a high potential for improvement.” twitter.com/sociedad…

reply retweet favourite
6:29 am · 18th May 2023
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

The ESE and affiliated patient groups were able to meet online and in person at the #ECE2023 this morning to discuss EDCs, drug shortages and future events. pic.twitter.com/TWAa…

reply retweet favourite
9:32 pm · 16th May 2023
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

It’s been really encouraging to see so much great work going on into #parathyroids - and to be able to see it all online. Thanks to everyone and to @ESEndocrinology #ECE2023 pic.twitter.com/aMYZ…

reply retweet favourite
9:21 pm · 16th May 2023

Read our quick guide to hypoparathyroidism

All about hyperparathyroidism

Parathyroid UK
6 The Meads
East Grinstead
West Sussex
RH19 4DF

Contact us

Helpline: 01342 324091

© 2023 Parathyroid UK · All Rights Reserved · Privacy · Disclaimer · Site by Charity & Biscuits.