Hypoparathyroidism sjúklingar á Íslandi. Velkomin!
Hypoparathyroidism (hypoPARA) is a rare disorder, which is characterized by the lack of parathyroid hormone (PTH). This leads to a low level of the electrolyte of calcium (ions) in the blood. 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 hypoPARA Organisation is directed by people with hypoPARA, 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.
The organisation aims to keep you up to date by having contact with professionals and by following research and development. In this way, we hope to build a friendly and active organisation in the Nordic countries of Europe.
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.
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.
If you wish to become a member, please tell us. Membership is free. Through your membership you may also be able to take part in our closed Facebook group for Iceland.
Your membership will help us to strengthen our organisation. This will benefit research and the research for a better treatment and a better quality of life.