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.
Quality of life in hypoparathyroidism - patient survey
Members who are UK residents are invited to take part in this new survey which aims to find out about the true quality of life experienced by people living with any type of hypoparathyroidism. If this is you, please take part as soon as possible. The survey link has been emailed to all members. If you haven't recieved it please get in touch.
We are delighted to announce the launch of Hyperpara UK, our facebook support group for our members with primary or secondary hyperparathyroidism. Run by a committed and knowledgeable team of current and former patients, this group provides support and advice in a safe and welcoming environment.
Click here to request to join.
Rare Disease Day 2017
This year we were excited to be involved in the following events for Rare Disease Day:
The stories of 3 of our members with different kinds of hypopara were featured in the Mediaplanet-UK Rare Diseases Campaign in The Guardian. Isabel Wray da Silva’s story is about her experience living with post surgical hypoparathyroidism, while Vincent Thorpe Tavares’s mum Christabel talks about him being born with a very rare genetic form. You can read both stories in full here
The charity Climb feature another of our members, Harriet Macleod, talking about her pseudohypoparathyroidism here
If you would like to help Vincent buy a waterproof pump please read more and donate here
Two of our members, Stephanie Agnew and Anne Cusack represented us in Scotland this year at the Rare Disease Day reception at Holyrood on the 1st March. You’ll be able to see photos in our newsletter.
Bears4Rare was an initiative from Shire which took place no March 15th and aimed to bring public attention to the difficulty rare disease patients face accessing treatments.
An installation of 1,000 teddy bears on Waterloo Station was very effective! Each bear was tagged with a real patient story and together they represented the number of people living with a rare disease passing through the station every hour. It was also designed to get people waiting for a train to think about the wait that a person with a rare disease has for a diagnosis or access to treatment
Isabel Wray, Aisling Duffy and Claire Butchers from Hypopara UK were there too. Well done Verity and team from Shire!
Primary Hyperparathyroidism - new leaflet out now
You can read the leaflet online, download it to print or order hard copies.
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.
Read our press release here
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.
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
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
Visit our 'Living with Hypopara' collection of patients' stories 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.
Pregnancy and Hypopara
To mark World Hypopara Awareness Day this year we focused on pregnancy, childbirth and breastfeeding and Hypopara.
This can be difficult; there is little research in this field and many doctors have never had to manage a hypopara woman, let alone a pregnant one! The stories we bring you show how four young women met this demanding challenge with a positive attitude - and the most beautiful results.
Meet Isabel and her baby, Rafael. Isabel has permanent post-surgical hypopara following a total thyroidectomy due to thyroid cancer in 1988. As a result of her long-term medication, she also has stage 3 chronic kidney disease. Read Isabel's full story and other stories here.
If your baby is diagnosed with Hypopara please get in touch. Read Vincent's Story here
Are you or your family affected by a parathyroid condition? Are you a doctor, scientist or student? Whatever your interest we aim to :
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.
We are a member of Genetic Alliance UK, Rare 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