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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.

 

 

 

Parathyroid transplantation - your views

The first ever study into hypopara patients' views on parathyroid transplantation is now published. Many thanks to Hypopara UK advisor and surgeon Radu Mihai and Alexander Stevenson, Oxford University, and to everyone who took part in the survey.

Read the study here 

 

 

 

 

International survey on hypoparathyroidism.

THANK YOU to the patients and carers who took part in the International survey on the Burden of Illness Among patients with hypoparathyroidism. The interim abstract and poster will be presented at the European Society of Endocrinology annual  conference, the ECE2018, in Barcelona in May. 

Not seen the UK 'quality of life' survey results yet? See below...

 

 

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.

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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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