Hello, we are the Netzwerk Hypopara (Network Hpopara). Hypopara is short for hypoparathyroidism, which is the medical term for the situation you are in when your parathyroid glands do not function properly. We have been diagnosed with this rather rare disease. We are an active self-help group/working group and see ourselves as a forum to reach out to other patients, to offer them help to cope with an occasionally difficult daily life and to inform them about this condition, its cause and how to deal with it.
We aim to promote the exchange of experience and information between patients and medical specialists. We address problems that are often associated with hypopara and aim to develop solution strategies. We would like to lobby for hypopara patients in matters concerning their treatment and also in public health issues, and to find the optimum therapy for everyone who has the condition.
With this in mind, we plan activities, allocate tasks, initiate projects and work on their realization.
By attending medical congresses, training courses and informational events, we intend to improve the communication and cooperation between patients, physicians and clinics in matters of hypoparathyroidism. We also initiate projects that contribute to the education of physicians and patients about hypopara.
We set up the Network Hypopara forum at www.sd-krebs.de in order to plan activities, discuss our course of action, allocate tasks, and initiate and realize projects. We met for an online audio conference once a month (the 2nd Wednesday of the month) to coordinate schedules and to make decisions. Before every online audio conference, the members of the Executive Team have a phone meeting to plan, among others, the topics for the next audio conference. In our audio conferences, we concentrate on current projects and allocate tasks to the members of the Netzwerk Hypopara while paying attention to the respective time needed and also to individual skills.
The members of the Executive Team meet face-to-face at least three times a year. In this meeting, they talk about impending issues and discuss and plan upcoming projects.
Every two years, we organize a National Hypopara Conference. Our 3rd National Hypopara Conference will take place from the 28th to the 30th of April 2017.
• Expanding of international networking activities with patient groups
• Setting up and strengthening of local patient groups (regional networking)
• Exploring the possibility for an at-home measuring device for calcium
• Planning of the 3rd Hypopara Conference in April 2017
• Building of the Netzwerk Hypopara’s website and creation of its content
• Development of an emergency card (only available in German: Notfallausweises für Patienten mit Hypopara)
• Development of a leaflet to inform patients about hypoparathyroidism before their thyroid surgery
(in German: Merkblatt Hypoparathyreoidismus zur Aufklärung vor einer Schilddrüsenoperation)
• Participation in the development of European guidelines for the treatment of adult hypopara patients
• Development of our leaflet “The Network Hypopara introduces itself”
• National Hypopara Conferences 2013 in Hamburg and 2015 in Goettingen
Examples of our Current Work
• Creation and continuous update of a list of answers to frequently asked questions (FAQ)
• Attending of congresses and conferences of medical societies
• Participating in information meetings and training courses of clinics
• Participating in and supporting of research projects dealing with hypopara
• Participating in studies concerning hypopara
• Planning of our 3rd national Hypopara Conference in 2017
Claudia Josewski | Dieter Krogh | Brigitte Liebig
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