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.
First European 'Patient Advisory Group' board meeting
On 8th July an historic event took place in the hypopara world when the leaders of the European hypopara organisations met for the first time.
L-R Top Claudio Marelli & Madeline (Shire), Laura Masi (Italy), Bill Glenister (carer), Liz Glenister (UK), Greg Robertson (Shire), Natalie Grosset-Holenka (France) Erik Jensen(carer), Helen Dahl Hansen (Nordic), Isabel Wray da Silva (UK). Seated Blaithin O'Donnell (Ireland), Louiza Ergin (Denmark), Agneta Bjormryd (Sweden), Amy Karrer (Shire).
Leaders from UK, Ireland, France, Italy, Norway, Sweden and Denmark were brought together by Shire International of Switzerland to form a Patient Advisory Group of European leaders to advise on patient needs.
After a welcome dinner in London we spent the next day listening to each other, learning about patient needs in each country, and discussing ways we could work together to improve the lives of patients across Europe.
We hope that our ideas will be carried forward and that a European Hypopara Alliance will grow out of this meeting. We look forward to working together because together we have a louder voice. Thank you to Shire International and Bioscience Communications for a productive and insightful meeting.
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.
Liz Glenister named Britain's Best Volunteer 2016 winner
We're so excited! Our very own founder and chief executive, Liz Glenister, has won the Britain’s Best Volunteer award 2016 in recognition of her ten years' work for patients with hypoparathyroidism. Congratulations Liz!
Hypopara UK has been awarded £1250, which will be used to support new parathyroid stem cell research in the UK.
Liz commented: ‘I’m absolutely thrilled to have won this award which I see as a fantastic opportunity to raise awareness about this rare condition and our small, but far reaching charity. We are raising funds for vital stem cell research at the moment so this prize will really help towards that goal. Thank you to everyone who voted, to my committee who nominated me and well done to all the finalists who all work so hard and represent such worthy causes.’ 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