Welcome to Hypopara UK

We are the only patient organisation for adults & children living with a parathyroid condition in the UK and Ireland. Diagnosing and living with a long term rare disease can be challenging and isolating but we're here to help you. We care about improving your quality of life so we raise awareness about our rare conditions, support new research, fundraise, and offer friendly support and reliable information about all types of hypoparathyroidism and hyperparathyroidism. We hope you will join us - we look forward to meeting you.

 

 

 

 

  • SfE BES Harrogate 2017
  • BAETS Belfast Oct 2017
  • ECE Lisbon May 2017
  • CASR Florence 2017 (leaflets)
  • SfE CU/ENU Birmingham 2017
  • SfE NCC London 2017 
  • and more....    

 


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.'

This new report was met with much interest at the recent SfE BES 2017 conference and we hope it will help lead to greater understanding about the challenges that patients face and which so urgently need addressing.

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 on CaSR 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.

 

 

 

Hypopara Europe Network 

Hypopara UK launches the Hypopara Europe Network in Lisbon at the European Society of Endocrinology conference ECE2107 on May 21st - 23rd.

All set up and ready to go (l-r) are Cristina Galligani (Italy), Isabel Wray da Silva (UK), Natalie Grosset 
(France) and Mari Hartgen (UK/Spain).

 

 

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. 

 

Corporate Partners

We are now looking for our first Corporate Partners. If you are a UK company or know a company who may like to benefit from partnering us please click here to learn more.

 

The work of small charities

Our founder and chief executive, Liz Glenister, won the 'Britain’s Best Volunteer' award 2016 in recognition of her ten years' work for patients with hypoparathyroidism. 

The award is from Markel who run the award with the Small Charities Coalition. Huge thanks to them both. Read their article here and watch the video they made about us and why this award is so important to a small charity like ours. Read our press release here

 

   

              

European Society of Endocrinology Clinical Guideline: Treatment of chronic hypoparathyroidism in adults

The first ever clinical guideline for the treatment of hypoparathyroidism has just been published! Hypopara UK has been working towards this day for a long time, raising awareness about patient needs and the need to provide information for professionals. Weare very pleased to have been invited to review this paper and we have also collaborated in the development of the accompanying patient leaflet which will be out soon.

We are very pleased to see so many recommendations that agree with our own patient findings and we hope that guidance on the use of PTH therapy will soon be amended.

You can download the guideline from the ESE website here 

                           

 

 

 


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 mostly, 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' and Pregnancy and Hypopara' click here

Read the PARADOX study, carried out in 2013, which finds a 'high burden of illness in patients with hypoparathyroidism' and has now been published in the Endocrine Practice journal. The full study is available to read here for members only. 

  

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.

 

How you can help us

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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