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PRESS RELEASE

For immediate release

29.3.16

  

Rare disease charity volunteer wins Britain’s Best Volunteer 2016

Liz Glenister, the volunteer co-ordinator of Hypopara UK, has been crowned Britain’s Best Volunteer 2016.

Awarded by the Small Charities Coalition and Markel, Liz beat hundreds of entrants and five finalists in recognition for the set-up and management of Hypopara UK, a charity that supports people with rare diseases of the parathyroid.

See the announcement and video released by Markel here 

Hypopara UK has been awarded £1250, which will be used to support new parathyroid stem cell research in the UK.

Liz was nominated by two volunteers who help Liz manage the ever-expanding Hypopara UK, Isabel Wray de Silva and Aisling Duffy.

Liz set up the East Grinstead-based charity 11 years ago after her own experience of living for many years with undiagnosed brittle Hypoparathyroidism following surgery for thyroid cancer in 1992.

As a teacher with three young children, the condition forced Liz to give up work and abandon research for her MA. When doctors couldn’t help her, she decided to set up a website where fellow sufferers could exchange ideas and information.

Liz manages the charity full time as a volunteer. From no information on the condition available to patients in 2005, Liz has worked tirelessly to raise awareness, campaign for clinical trials (successfully), develop guidelines and patient information with medical specialists and provide patient support. Hypopara UK now has almost 2,000 members and is growing daily.

In addition to managing the charity, Liz has set up a website, two helplines, on and offline support groups and a Facebook support forum. Liz also attends medical conferences and events to raise awareness in the medical profession of hypoparathyroidism. The charity is managed entirely online as Liz can’t travel far from home without support.

Liz created World Hypopara Awareness Day on 1 June, which helps raise awareness of this rare disease and is now celebrated by hypopara groups around the world. Liz also set up Hypopara Australia and Hypopara France.

Liz Glenister 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.’

Aisling Duffy said: ‘Liz has been a lifeline to me and thousands of other hypopara sufferers. When you’re diagnosed it’s rare if you get much support or information, so Hypopara UK is a lifeline for people like me. Liz is there to give advice and support whatever the time of day. She’s helped me and others petition our consultants for better treatment and helped us understand and live with the condition.”

- ENDS –

 Contact: Liz Glenister, www.hypopara.org.uk, 01342 316315 or lizglenister@hypopara.org.uk

 Note to Editors

Hypoparathyroidism (or Hypopara or HPTH for short) is a rare endocrine condition in which insufficient or inactive levels of parathyroid hormone (PTH) are produced by the parathyroid glands in the neck.

This leads to low calcium levels in the blood, a condition called hypocalcaemia which can be a serious condition if untreated.

Hypoparathyroidism may be caused by a congenital, genetic or autoimmune disorder, which affect the function of the parathyroid glands or, more commonly, it may occur as the temporary or permanent result of surgery to the neck where there is removal of, or damage to, the glands.

There is no cure, the condition can be life threatening and there are no home testers for patients to check their calcium levels. It can cause serious renal problems and siezures especially if untreated or treated incorrectly (which is common as a poorly understood rare condition). Highly praised website, 2 helplines, facebook group and patient groups on and offline.

Hypopara UK is a national patient support organisation. From no information on the condition available at all in 2005, it has gone from strength to strength, raising awareness, helping to bring about clinical trials, guidelines and patient information. Patient support is necessary as the condition is hard to manage and current treatment not ideal.


 

World Hypopara Awareness Day - Monday 1st June 2015

Hypopara UK is proud to be part of a growing family of hypopara patient organisations around the world - and to have founded some of them as well. In 2015, we set up the World Hypopara Awareness Day website to celebrate the day when the world hypopara family unites and to help make our global presence more visible. 

Please read our press release here:

World Hypopara Awareness Day website

 

 

Sunday 1 June 2014 

World Hypoparathyroidism Awareness Day (WHAD).

About the WHAD logo


   
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