Clare Earps raised £350 for HPTH UK - thank you,Clare!Clare Earps Manchester 10k Great Run on 17th May 2009 click
here to donate
Gayle Scott Leeds 10k Run For All on 21st June 2009 Click
here to donate
Rob Healy Newquay Triathlon (1500m sea swim, 40k bike,10k run)on 13th Sept 2009 Click
here to donate
GOOD LUCK AND OUR THANKS TO YOU ALL
If you have a marathon place in any event this year and would like to run for us, we'd love to hear from you. Please email
liz@hpth.org.uk FEELING FIT? If you would like to raise money for us by doing a CHALLENGE please visit
http://www.bmycharity.com/challenges.aspx You can set up your own fundraising page for us, whether you run or not, at
https://www.bmycharity.com/V2/main_V2.aspx?p=homepage1Thank you
Rare Disease Day 29th February 2009Rare diseases are collectively not rare! There are over 6000 rare conditions identified, and they affect over 3.5 million people in the UK at some point in their life. February 29th saw patient charities, medical professionals and industry representatives calling on Health Ministers to move forward with EU proposals to develop a national plan for the treatment of all rare diseases. HPTH UK was represented at Parliamentary receptions in London by Liz Glenister and Judith Taylor and in Edinburgh by Mandy Mainland. It is always heartening to see different groups coming together to support a common cause and this day was a very important one for patients with rare diseases like Hypoparathyroidism - a day of promise and hope for the future.
Alastair Kent, Chair of Rare Disease UK, said:“It is important that those affected by rare conditions are offered a strategic approach to the provision of their healthcare, currently it is all too frequent that patients with rare conditions are left without accurate information and unable to find adequate support. The development of a national plan will go a long way to providing the best practice care and support that the estimated 3.5 million patients with rare conditions desperately need”. He added, “Having an international day to raise awareness of Rare Diseases helps to bring this issue to the forefront of people’s minds. Rare Disease Day highlights that patient care is a public affair and one that will not resolve itself without input from Government”.
Dr Peter Corry, a leading Paediatrician at St Luke’s Hospital, Bradford, a keynote speaker at the Rare Disease Day reception said: “I have come here today with colleagues and patients from Bradford as we all feel strongly that raising awareness of rare conditions is vital to improving the lives of those living with severe, or even life-threatening conditions. Diagnosis is often difficult and the complex treatments required may involve several specialists. Frontline medical staff need good sources of up-to-date information, clear pathways and
access to the appropriate experts. The Payment by Results system of payments for hospital clinics often doesn’t reflect the complexity of these rare, and often complex conditions”
Kerry Leeson, from Alstrom Syndrome UK spoke about the benefits of having coordinated care, “As a parent of a child with Alstrom Syndrome, I feel very fortunate to have access to specialised multi-disciplinary clinics. The clinics make such a difference to our lives and it makes us feel increasingly confident that the specialists we see are fully aware of the condition and the problems many of our families face”.
HPTH UK would like to thank Rare Disease UK for organising this event and for the important work it is doing. Rare Disease UK is an alliance of key stakeholders brought together to develop a national plan for Rare Diseases in the UK. The Genetic Interest Group (GIG) is the UK national alliance for all people affected by genetic disorders. They are working together to promote Rare Disease Day in the UK. To find out more, please visit
http://www.rarediseaseday.org
UK Clinical Study on PTH 1-84 The UK’s first Clinical Study into the use of parathyroid hormone PTH 1-84 for Hypoparathyroidism, sponsored by NPS Pharmaceuticals, is now open and is recruiting UK patients now. See Press release |
HERE|.
Two centres will be running the trial in the UK. HPTH UK members who live within 40 miles of Oxford or Liverpool are invited to register their interest if they would like to participate. You will be contacted when the trial begins.
HPTH UK cannot guarantee that all members who register for the trial will be accepted on to it due to geographical and/or medical criteria. Details of the eligibility criteria may be seen |
HERE|.
We hope that this hormone replacement therapy may lead to a safer and more reliable means of treatment for HPTH patients in Europe and that this trial will help to further knowledge and understanding of Hypoparathyroidism. Should the trial be successful, PTH 1-84 will be licensed in the UK specifically for the use of patients with Hypoparathyroidism for the first time.
In the USA, there are currently two ongoing patient studies. One, on PTH 1-34 and it’s effects on bone in HPTH patients, is being conducted by Dr. Winer at the National Institutes of Health and the other, on the new, full version PTH 1-84 is by Dr. Bilezikian and Dr. Rubin at the Columbia University College of Physicians and Surgeons. If you would like to talk to a patient already undergoing treatment on the US trials, please visit the HPTH UK forum or the HPTH UK facebook group.
If you live within 40 miles of Oxford or Liverpool and would be interested in participating in the UK trial please email the following details to liz@hpth.org.uk1) Your name, address and email address.
2) Name and address of your hospital.
3) What type of Hypoparathyroidism you have ie
a) Post surgical ( state whether thyroid or parathyroid operation or both/other) or
b) Genetic/other variety such as Familial, Auto immune, Idiopathic etc.
4) How long you have had Hypoparathyroidism( in years and months)
5) Your HPTH medication and current dosages.
We will send you further information as soon as possible but meanwhile if you are able to visit the forum or our facebook page and join in the discussion, we look forward to meeting you.
Disclaimer: Please note that patients choose to enter this trial at their own risk. HPTH UK is not responsible for any part of this trial nor for any patient outcomes and cannot endorse PTH 1-84 as a treatment for Hypoparathyroidism until satisfactory trial results are published.
Thank you
Hypoparathyroidism (HPTH) is a rare condition which occurs where there are inadequate or ineffective levels of parathyroid hormone and may be due either to a genetic disorder or as a direct result of neck surgery.
Coming to terms with a rare condition can mean that you feel isolated and vulnerable. Finding information to help you and your doctor reach a diagnosis or to work out ways of managing your medication can be difficult too. HPTH UK can help you with all these problems through this information website and friendly online forum. If you have any questions please don't hesitate to contact us.
We rely on your donations to keep going. Please - make your visit to this site count and give whatever you can afford. HPTH UK is run entirely by volunteers and membership is free.
There are 2 ways to donate: you can click on the button above to pay quickly and safely online via Pay Pal OR you can send a cheque to HPTH UK care of the address below.
FEELING FIT? If you would like to raise money for us by doing a CHALLENGE please visit
http://www.bmycharity.com/challenges.aspx OR JUST GO SHOPPING - using EASYFUNDRAISING every time you shop online will cost you nothing but we will get a donation for every purchase you make. Please click on this link to get started
http://www.easyfundraising.org.uk/hpth THANK YOU
Wanted: Volunteer FUNDRAISER for HPTH UK. Got some time to spare? We really need you! Please contact liz@hpth.org.uk
Contact us
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HPTH UK - 6 The Meads - East Grinstead - West Sussex - RH19 4DF - UK
Email : liz@hpth.org.uk
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Disclaimer Information on this site is given in good faith and every effort is made to ensure accuracy. The articles reproduced here ( by permission of the publishers) are intended for information only and are not a substitute for the medical advice of your GP or consultant.
©2005-2008 Hypoparathyroidism (HPTH)UK is an unincorporated association.