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The national voice for people living with parathyroid conditions

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  • 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

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    Related conditions

    CaSR

    • A quick guide to hypopara
    • Suspect you have hypopara?
    • Recently been diagnosed?
    • Causes
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  • 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
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      • What else can I do to help myself?
    • For Women
      • Your hormones and calcium
      • For our hypopara mums
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      • My baby has hypoparathyroidism
      • Looking after children with Hypopara
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  • Hyperparathyroidism
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About us

Parathyroid UK is a small charity for people living with rare and hidden parathyroid disorders. It is the only patient organisation in the UK and Ireland devoted specifically to their needs. 

Who we are

We are currently run by our CEO and our management committee teams of volunteers who are patients themselves and understand how challenging and isolating it can be to live with a hidden, rare, unrecognised or long-term condition. We are in the process of setting up a new board of trustees.

We work closely with our medical advisors , professional societies and many health organisations to help bring about the best treatment and care.

What we do

We are passionate about providing the best possible service for you; everything we do is patient-led and we strive to do it with empathy and integrity.

We campaign for better care and raise awareness to bring about better recognition of the needs of patients living with all the rare hypoparathyroidism conditions, and more recently, with the more common but also hidden hyperparathyroidism conditions too.

We bring together healthcare professionals who work with us to produce information, educate others and identify areas for research.

We have helped to bring about many firsts – clinical trials, treatment and guidelines  – but we’re not out of the woods yet.  Living with a parathyroid hormone condition of any kind is a complex challenge that still needs better care, understanding,  management and treatment.

We reach out around the world to find new patients and found new organisations. We also run European and a World facebook support groups which translate languages so nobody gets left out. For hypopara, we set up a World Hypopara Awareness Day on June 1st to help our global voice grow even stronger, to increase numbers and make us a viable concern for researchers.

Patient Support

Patient support is always our first priority. Our online support groups are safe and welcoming places to learn, share experiences and meet others who ‘get’ it. We are a parathyroid family; our hypopara members are with us for life and our hyperpara members, although eventually cured, may also go undiagnosed for years so many close friendships are made. New members in both groups often comment on how warm and supportive we all are and how much they learn from each other.


In this section:

Our Teams

Our Medical Advisors

Our history

Annual reports

Contact Us

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

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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_…

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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…

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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…

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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…

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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…

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9:21 pm · 16th May 2023

Read our quick guide to hypoparathyroidism

All about hyperparathyroidism

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