From our Chief Executive:
‘I founded Hypoparathyroidism UK in 2005 after my own experience of living for many years with undiagnosed brittle Hypoparathyroidism following surgery for thyroid cancer in 1992.
I found living with a rare disease isolating and frightening. It was difficult to find any information and many doctors had simply never heard of the condition before. 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.
So I set up a forum and wrote an information website and set about raising awareness about this little known condition and gathering together a team of highly regarded specialists.
Eventually we became HPTH UK and later Hypopara UK and by then I was supported by a small, dedicated committee of patients who worked hard to support patients, provide information and raise awareness around the world, bring people together and fundraise. We worked closely with our medical advisors to bring about research for better treatment. We became involved in groundbreaking studies on hypoparathyroidism, exhibited at conferences in the UK and internationally, and became recognised as a national patient organisation.
Five years ago we also began to support hyperparathyroidism patients, at their own request. We worked on hyperpara research, provided information and set up another support group. Our patient information leaflet on Primary Hyperparathyroidism was Highly Commended by the BMA. We contributed to the NICE guidelines on Primary Hyperparathyroidism published in May 2019.
Today we have over 2,500 members and are well known in the endocrine world so we are delighted, in 2019, to bring everyone together under one umbrella, Parathyroid UK.
I am very proud to be part of this small but far reaching organisation and I am deeply committed to its aims. I never fail to be moved by the stories of the patients who contact us and by the efforts of the volunteers and healthcare professionals who work so hard on our behalf.
We’ve come a long way since 2005 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,