Network Hyoparathyroidism – Self Help Group

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 2^nd 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 4^th National Hypopara Conference took place from 10 May  – 12 May 2019 in Halle, Germany. The next one will be held in 2021.