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.
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.'