Hypoparathyroidism in Iceland. Welcome!

Publisert 15.11.2006 12:49

Hypoparathyroidism (HPTH) is a rare disorder, which is characterized by the lack of parathyroid hormone (PTH). The prevalence is estimated to be 1/15.000. Normally it has developed as a complication after an operation on the thyroid glands. The disease may also be inherited or connected to other diseases. Having a rare disorder gives the person a feeling of isolation. It may be demanding both for the patient and the doctor to find the best treatment.

Nordic HPTH Organisation
is directed by people with HPTH, with the help and advice from interested professionals. We hope to support our members by giving advice and information. We also aim to increase understanding about the condition and fight for a better treatment and care. We wish to increase the contact between members with this rare disorder. Nordic HPTH Organisation is member of EURORDIS, HPTH Europe and the American Hypoparathyroidism Association Inc.

Knowledge.

The organisation aims to keep you up to date by having contact with professionals and by following research and development. We also like to link our homepage to other websites, articles and organisations that gives information and advice. In this way, we hope to build a friendly and active organisation in the Nordic area in Europe.

Medical advice.
Our website is meant for information and not as substitute for medical advice. Remember that every person is unique and that every patient story is different.

Contact.
You are not alone! This website’s highest goal is to be a place where people with this rare disorder can make contact. It is not unusual for people with this disease to live a life totally isolated from others with the same disorder. This gives an enormous feeling of isolation. Many of our members have much experience with the disease and we can all be a helpful resource and support to each other.

Membership.
If you wish to become a member, please tell us. Membership is free.

Contact list.

We wish to stimulate contact between members in the same area. We would like you to tell us if we can use your e-mail address for this purpose.

We know that 255 patients with iatrogenic Hypoparathyroidism were registered in the Endocrinologic "out patients" departments in Norway in 2004. Other than this we don’t know how many we are. Operations with this serious complication should be officially registered, but it is not done.

Through your membership you will help us to strengthen our organisation. This will benefit research and the research for a better treatment and a better quality of life.