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 2019
28th February : Read our CEO Liz Glenister's article about post surgical hypoparathyroidism in The Guardian with a longer version online.
The Guardian's Rare Diseases 2019 supplement by Mediaplanet UK is out today with more content available online at https://www.healthawareness.co.uk/rare-diseases/hypoparathyroidism-rare-incurable-and-often-caused-by-surgery/
Also find exclusive content from key thought leaders and learn more about rare diseases. #RareDiseases #RareDiseaseDay
Rare diseases affect an estimated 300 million people around the world. There are over 6000 different diseases. So rare’s not so rare after all. Support the rare disease community by showing your rare. With your help, we can raise awareness and increase support for research.Show your rare. Show you care.
#ShowYourRare is the interactive social media campaign for Rare Disease Day. You can get involved during the month of February by painting your face and sharing a photo using the hashtag #ShowYourRare in solidarity with people across the world who are living with a rare disease. How? It's simple:
1. Paint your face using brightly coloured face paints
2. Pose for a selfie or group photo
First survey to query need for calcium supplementation in hypopara
'Is calcium supplementation always needed in patients with hypoparathyroidism?' Read our findings here
Many thanks to authors Dr Al-Sharefi, Liz Glenister, Margaret Morrison and Dr Richard Quinton, to Mari Hartgenpatients who took the time to take part in the survey.
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 impact of 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 has been presented at numerous endocrine conferences around the world.
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.
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.'