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About Hypopara UK

 

From the Chief Executive

Founded in 2005, Hypopara UK is the voice for people affected by parathyroid conditions and the only patient organisation in the UK and Ireland devoted specifically to their needs. 

(Scroll down to video)

We careWe provide support, information and advocacy for patients, their families, friends and carers. We are run entirely by a small, committed team of volunteers who are patients themselves and understand how challenging and isolating it can be to live with a rare long-term condition. New members often comment on how warm and supportive to each other we all are. We are passionate about providing the best possible service; everything we do is patient-led and we strive to do it with empathy and integrity. Patient support is always our first priority.

We challenge: We speak out about these rare conditions to the public and the medical profession on behalf of our members and we work closely with our medical advisors , professional societies and many health organisations to help bring about the best treatment and care. When I began Hypopara UK most doctors had barely heard of hypoparathyroidism and now we have a new hormone replacement in the offing and the first treatment guidelines have been published - but we're not stopping there! Managing a rare condition is a complex challenge that still needs better understanding.

We reach out: With a rare conditon it's important to be able to meet fellow patients and build friendships so we have always run online groups and we have recently started local groups so enable meetings in the real world. We also bring together professionals to produce information and new research. We are founding new organisations around the world and have set up a World Hypopara Awareness Day on June 1st to help our global voice grow even stronger, to increase numbers and make us a viable concern for researchers. 

I have lived with brittle post surgical hypoparathyroidism for 25 years and I founded Hypopara UK because I didn't want anyone else to go through the same terrifying experience as me. I wanted people to be able to find each other and to have access to information and support that simply wasn't available then. (In 1992, most doctors had never heard of hypopara.) I really hope it helps. We've come a long way since then but it is my dearest wish that with your continued support we can make the future for all parathyroid patients much brighter. 

And finally, it was a great honour to win the Small Charities Coalition and Markel 'Britain's Best Volunteer Award 2016'. You can see the video they made about us below. Thank you to everyone who so kindly voted for me and in doing so helped to raise awareness about parathyroid conditions and about our small but very special charity. 

With my very warmest wishes, 

Liz Glenister


 

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