Get Involved

Welcome to Hypopara UK

Empowering, educating & supporting patients since 2005

We warmly welcome you to the UK & Ireland patient organisation for adults & children living with a parathyroid disorder. If you have any type of rare hypoparathyroidism,  psuedohypoparathyroidism, caSR or the more common primary hyperparathyroidism we're here to help you to understand your condition and improve your quality of life. Read more about how we help here and join us here to access our support group. We look forward to meeting you.





Rare Disease Day

We are very excited to be part of the Media Planet Rare Disease Day campaign launched in The Guardian today!

Our article features world expert Professor Raj Thakker talking about hypoparathyroidism and a new treatment for genetic forms of the condition, and Anna Deason on her experience of being a mother to Fianna who was born with a rare version of this rare disorder.


Click here to read the article.




Awareness opportunities for rare conditions are invaluable and we'd like to thank Media Planet, Prof Thakker, all the parents  who submitted their stories, and the Love and Deason families whose fundraising helped to make this project possible. 



Sandocal - temporarily out of stock

The manufacturers of Sandocal, Glaxo Smith Kline, say that there are currently 'availability issues ' with all Sandocal tablets and they will be out of stock until 10th May. They warn that it may take some weeks after that date until it is back in the chemists.

We recommend to switching to Ad Cal, a popular calcium supplement which is not effervescent and does not contain aspartame. 

Ad Cal tablets: Each 1500mg chewable tablet contains:

1500mg calcium carbonate (equivalent to 600mg of elemental calcium).

Excipients: Xylitol, polydextrose, pre-gelatinised starch, sodium saccharin, magnesium stearate, fruit flavour (contains propylene glycol and maltodextrin).

Sandocal tablets: Each effervescent tablet of 1000 mg contains:

2263 mg of calcium lactate gluconate and 1750 mg of calcium carbonate (equivalent to 1000 mg of calcium).

Excipients: 3323mg of citric acid anhydrous (fine granulate), 30mg of aspartame (E 951), 500 mg of sodium hydrogen carbonate, 30 mg of Orange flavour powder (containing sorbitol (E 420) and dextrose).


Calling friends and family of UK based hypopara patients - we still need ten more replies!

Do you feel like your hypoparathyroidism symptoms are uncontrolled by your current treatment?

Do you have regular help and/or support from a friend or family member?

If you have someone who regularly helps and supports you, we would like to hear from them.

We are currently conducting a study to understand how helping/supporting someone with hypoparathyroidism impacts on daily life.

In this survey we refer to this person as a caregiver, but this is a term for any family member or friend who may help you with regular activities, such as medication, grocery shopping, household chores, transportation, for example.

The results will be used to understand how to manage hypoparathyroidism effectively in society and may be published in scientific literature. If your “caregiver” would like to take part in this industry-sponsored study, please follow the link below. Many thanks in advance for your participation.

Please follow the link below to take part in the survey:




Video on latest stem cell research

Watch the excellent video that consultant surgeon Sebastain Aspniall and his team at Newcastle University have made to explain parathyroid stem cell research and why it is needed. 

Click here to watch the video 

21st November 2017



Shire 'quality of life' report out now

We are delighted to bring you the results of the 'Living with Chronic Hypoparathyroidism' survey which was conducted by Shire, in collaboration with Hypopara UK, on patients with this rare condition.

The report sets out for the first time the extent of the hypopara patient experience in the UK. Findings describe daily challenges ranging from 'the impact the condition has on patients' ability to lead a normal life - to work, drive and socialise - to the frequency with which their condition causes them to make an unplanned stay in hospital, or a trip to A&E.'

The report is now available in pdf to download here. To order hard copies please click here to send an email.


Primary Hyperparathyroidism leaflet wins BMA award

We are delighted to announce that our new patient information leaflet about Primary Hyperparathyroidism won 'Highly Commended' at the BMA Patient Information Awards in September 2017.



Hypopara UK in 'The Guardian' 

Hypopara UK highlights calcium -sensing receptor (CaSR) mutations in the 'Children's Health' supplement by Media Planet UK, which appreared in The Guardian on 26th June 2017. If you missed it you can read Alfie's story and see our CaSR leaflet which was recently launched at the CaSR conference in Florence here.



For more news click here


Facebook support groups

You can be sure of a warm welcome when you join our parathyroid family online. We offer friendly advice and support to all our UK members in our Hypopara UK Group and Hyperpara UK Group. Open all hours! Please make sure you register on this website first.

We also run the Hypopara Europe Network Group and the World Hypopara Patient Group for both UK and non UK residents. 

Each support group also has a linked facebook page where information and news updates are posted - please 'like' to keep updated. 

Don't forget the Members pages here on our website too!





'What is living with hypopara like?' This is the question we get asked most often and its not an easy one to answer. Any rare, long term condition takes some getting used to and, in Hypopara, the need to manage calcium levels can be a challenge. Imagine a diabetic without a home tester or insulin - we don't yet have replacement hormone or home testers - but we're working on it.

Hypopara is an individual condition so everyone experiences it differently; symptoms may be mild in some people yet severe in others. There may be swings as levels fluctuate in response to factors such as exercise, diet, infection, stress and the menstrual cycle so adjustments in medication are occasionally needed, along with regular blood tests. Some people have very stable calcium levels while others don't but once medication is properly adjusted, most people are able to lead a normal life. There is a lot you can do to help yourself too - read more here

Listen to Emma's radio interview here 

Read our collection of patients stories about 'Living with Hypopara' , Pregnancy and Hypopara', and CaSR click here

Now there are some real answers to that question, complete with evidence. Read 'Living with Chronic Hypoparathyroidism', the new 'quality of life' report from Shire UK, just (November 2017).

Are you or your family affected by a parathyroid condition? Are you a doctor, scientist or student? Whatever your interest we aim to :

  • provide support and a place of contact for our members via our forum and telelphone helpline, newsletters and regional groups
  • provide information and education via our website and leaflets for patients & health professionals
  • raise awareness about Hypopara to the medical world and the wider public
  • campaign for better treatment and standardised care
  • promote and assist in new research

Contact us: If you have any questions about parathyroid matters or about Hypopara UK that haven't been answered on the website or if you have any suggestions or comments about the site please get in touch.


Get involved: Hypopara UK is run entirely by volunteers and our membership is free. We need your support to help us help you and others like you. If you’d like to enable us to continue our activities in research, awareness, education and support please click here to find out more. 

Please join us:  Raising interest in research into rare conditions is hard but the more members we have the more researchers are interested - and the louder our voice. Free membership of Hypopara UK gives you entry to our online forum and private facebook group (UK members only) and you will recieve trial & research updates and biannual newsletters, as well as ongoing support and advice. Just click the 'Join us free' button above to register.

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

We are a member of Genetic Alliance UKRare Disease UK , National Voices and Thyroid Cancer Alliance



Hypopara UK  is the operating name of Hypoparathyroidism UK, a small charity recognised by HMRC for tax purposes © 2005-2015 Hypopara UK

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