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** New website coming soon!**
Hypoparathyroidism UK (or HPTH UK) is the only national organisation committed to supporting children and adults affected by Hypoparathyroidism and other rare parathyroid disorders
UK PATIENTS TO GET MISSING HORMONE AT LAST?
Potential UK Clinical Study on PTH 1-84
HPTH UK would like to invite patients to register their interest in what we hope will be the UK’s first Clinical Study into the full parathyroid hormone PTH 1-84. Although not yet confirmed, there is a very strong possibility that a 6 month trial on PTH 1-84 is to be carried out in the UK. Endocrinologists in the UK have already been asked to register their interest and the trial could begin as early as September 2008.
Should the trial be successful, PTH 1-84 would be licensed in the UK specifically for the use of patients with Hypoparathyroidism. ( So far the 1-34 version has only been licensed for Osteoporosis patients.) This could mean that PTH would be on sale in the UK sooner than we think.
In the USA, there are currently two patient studies underway. 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.
We have joined together with HPTH groups across Europe, under our newly formed umbrella group HPTH Europe, to ensure that numbers of those with this rare condition are large enough to be viable. We are working together to ensure that the Parathyroid hormone, our missing hormone, will be trialled and made available to the patients who need it. We believe that this hormone will lead to a safer and more reliable means of treatment for HPTH patients in Europe and that a trial will help to further knowledge and understanding of Hypoparathyroidism.
URGENT: If you are interested and would like to be contacted should this trial take place, please email the following details to liz@hpth.org.uk
1) Name, address and email address.
2) Name and town/city 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.
6) Whether you feel your endocrinologist is experienced with HPTH and has managed your condition well
We will send you further information as soon as possible but meanwhile if you are able to visit the forum and join in the discussion, we look forward to meeting you. (You need to be a registered member of HPTH UK to do this.)
Thank you
**THE ROYAL PARKS HALF MARATHON IN LONDON**
Sunday 12th October 2008
HPTH UK is taking part in the Royal Parks Foundation Half Marathon in London in October, which will be our first major fundraising event. Join our runners, be a sponsor, or come along to support us on the day!
JACK GARDENER (55) has kindly volunteered to take up our charity place and run 13 miles just for us. Thank you Jack!! More about him soon.....
If you have secured your own place in the Royal Parks marathon and you would like to join our team, we would love to hear from you! Contact liz@hpth.org.uk
You can help Jack to help us by
* clicking on the DONATE button below or
* downloading a sponsor form for your friends to donate:
right-click HERE for PDF format
right-click HERE for Word format
Money you collect should be sent as postal orders or cheques to HPTH UK at the address below.
The money you help Jack to raise will help HPTH UK keep going.It will also help us to keep fighting - to raise awareness about the rare disease of Hypoparathyroidism, to support those living with the fear and uncertainty of an often uncontrollable condition and to campaign for much needed national guidelines and better treatment. This is our first major fundraising event - so please get involved.
12,500 runners will race through four Royal Parks taking in superb views of the London Eye, Buckingham Palace, Palace of Westminster, Marble Arch and the Royal Albert Hall. Race day wil be a fantastic day out for everyone, runners and spectators alike, with a fantastic variety of activities for all the family including the Brakes Food and Fitness Festival, the Charity Village and much, much more.
To find out more about this event visit the Royal Parks Half Marathon official website: royalparkshalf.com
Volunteer FUNDRAISER for HPTH UK needed.Please contact liz@hpth.org,uk
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 alone to keep going. Please - make your visit to this site count and give whatever you can afford. Membership to HPTH UK and the forum 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.
THANK YOU
LATEST NEWS>>>>>
A Rare Day for Rare Disease
29th Feb 2008 celebrated as First European Rare Disease Day
with UK reception in the House of Commons.
Evan Harris MP (with Alastair Kent, Director of GIG, right) opens Rare Disease Day reception at the House of Commons.
To mark Europe’s first Rare Disease Day 29th February 2008 over 200 patients and representatives from all over the UK travelled to Westminster to meet parliamentarians face to face to raise the awareness of the needs of patients with rare diseases and to discuss policy developments at a UK and European level. Liz Glenister was there to represent HPTH UK and was made very welcome by members of The Genetic Interest Group (GIG) who organised the event in tandem with Eurordis, their European partner.
GIG, to which HPTH UK now belongs, is a national alliance of patient organisations which support children, families and individuals affected by genetic disorders in the UK, while Eurordis ( to which we belong as affiliate members of HPTH Europe) is the European alliance of patient organisations and individuals active in the field of rare diseases).
Alastair Kent, Director of GIG, said “Raising awareness of genetic disorders is vital. Although alone they are rare, together there are over 3.5 million people in the UK affected. Many patients have similar issues and concerns and together we can help patients to access the NHS in a fair and equitable manner”.
The issues discussed were ones with which HPTH UK members will closely identify as we campaign for better treatment and guidelines:
•The importance and need of funded research and care in the rare disease area
•The need for specific health policies, support networks, best practice guidelines, and increased expertise among carers and healthcare professionals in the UK in rare diseases.
•The need to ensure common policy guidelines are developed and shared everywhere in Europe: specific actions – in areas such as research, centres of expertise, access to information, incentives for the development of orphan drugs, screening.
Although the UK does have specialist centres for some rare diseases these are not accessible by all and Tanya Collin-Histed, Executive Director at the Gauchers Association, a disease that affects 245 people in the UK, spoke about the difficulties that people with rare diseases face, as well as the benefits some patients had gained through receiving treatment and care at specialist centres. “Being able to see specialists in a centre dedicated to our condition has been of enormous benefit to patients. They are able to see people who look at their condition as a whole, and who know about the effects that it can have. They also have access to the latest treatment developments. It has been a lifeline to patients.” Patients with rare conditions in the UK and across Europe are now joining together to call for equal access to these health services.
A European Parliament Rare Disease Communication was published in November 2007 and this document discusses the possibilities for improving healthcare for patients with rare diseases in Europe by sharing information and knowledge between experts and between countries. For more information
http://ec.europa.eu/health/ph_threats/non_com/cons_rare_dis_en.htm
Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. There are over 8000 rare conditions identified, and they affect over 3.5 million people in the UK and over 300 million people in the EU at some point in their life. 1 in 17 people will develop a rare condition at some point during their life. Patients with very rare diseases, and their families, are particularly isolated and vulnerable and a day focussed on rare diseases can bring hope, as well as information to these individuals.
Rare Disease Day will happen every year from 2008 onward to raise awareness of rare disorders and the impact that they have on patients’ lives among the media, decisions makers, health professionals and the general public. If you want to attend the next event then please let us know.
Contact us
If you have any questions or concerns that cannot be addressed through the member's forum please get in touch.
We also welcome any feedback or suggestions you may have to help us improve our site and service.
HPTH UK - 6 The Meads - East Grinstead - West Sussex - RH19 4DF - UK
Email : liz@hpth.org.uk
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 |