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    Hypoparathyroidism

     

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Rare Disease Day 2017

1st March 2017

This year we were excited to be involved in the following events for Rare Disease Day:

Press campaign

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

Parliamentary Reception

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 campaign

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!

We are proud to be affiliated with:

ESE logo

Our information is also endorsed by:

BMA logo
British Thyroid Association
World Hypopara Awareness Day logo

We are members of:

Rare Diseases UK logo
Genetic Alliance UK
National Voices logo

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Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

Delighted to announce that winner of the World Hypopara Day Party prize for best UK post by a child is Amelie-Eve. Congratulations to Amelie met our CEO Liz Glenister last week to receive her giant teddy. We hope you’re enjoying the bear hugs, Amelie! facebook.com/groups/… pic.twitter.com/vaDc…

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4:51 pm · 17th June 2022
Twitter
Parathyroid UK
Parathyroid UK
@ParathyroidUK

Hypopara patients from a record 48 countries joined our awareness day party this year! (27 last year.) We had over 3,000 views, reached nearly 7,000 people with posts from people with post surgical, autoimmune, idiopathic, genetic, HDR, PHP, congenital & ADH. #HypoparaDay2022 pic.twitter.com/ONcr…

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4:49 pm · 16th June 2022
Twitter
National Voices
National Voices
@NVTweeting

Today one of our members @ThyroidTrust have released a new T3 Prescribing Report, highlighting the poor access to T3/liothyronine📰 Read the report in full here👉bit.ly/3NM3NOb twitter.com/ThyroidT…

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11:04 am · 14th June 2022 ·
Retweeted by Parathyroid UK
Twitter
Omair Shariq
Omair Shariq
@OmairShariq

John Bilezikian provides an update on upcoming guidelines from the 5th Intl. Workshop on Hyperpara highlighting involvement of multiple groups inc. @TheAAES. Grateful for opportunity to contribute as a (very) Jr. member of the surgical taskforce led by @DrNancyPerrier #ENDO2022 pic.twitter.com/63oE…

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11:44 pm · 12th June 2022 ·
Retweeted by Parathyroid UK
Twitter
Joy Wu
Joy Wu
@JoyYWu

Congratulations to John Wass, MD, MA, FRCP, winner of @TheEndoSociety Outstanding Leadership in Endocrinology Award #ENDO2022 pic.twitter.com/vtIP…

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11:38 pm · 12th June 2022 ·
Retweeted by Parathyroid UK

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