Network of pituitary and adrenal diseases
The Network Pituitary and Adrenal Diseases eV based in Fürth is a German self-help association of pituitary and adrenal patients, relatives and doctors.
The diseases the network deals with include Cushing's disease , prolactinoma , acromegaly , hormone-inactive pituitary adenomas , diabetes insipidus , Addison's disease, and pituitary insufficiency with a lack of cortisol , thyroid hormones , sex hormones and growth hormone . Groups for multiple endocrine neoplasia type 1, Conn's disease and children with pituitary insufficiency are also represented within the association .
history
It was founded as a non-profit association in 1994 by patients and endocrinologists in Erlangen . The network is the first self-help group for pituitary and adrenal diseases in Germany.
The number of members has increased over the years from 9 founding members to currently around 2,900 members. It is the largest nationwide self-help organization for these diseases in Germany.
The association has 33 regional groups that mostly organize regular meetings throughout Germany.
The first member of the board is Helga Schmelzer. Further board members are Thomas Bender, Norbert Ungerer, Elke Feuerherd and Brigitte Martin. The association also has a scientific advisory board chaired by Dietrich Klingmüller.
aims
The network has set itself the following goals:
- Help for self-help for those affected by promoting contact and exchange with other patients and doctors
- Creation and distribution of information material for those affected, their relatives, public institutions and therapists
- Support research in the field of pituitary and adrenal diseases
- Promotion of seminars and further training measures for those affected and doctors
In order to achieve these goals, the association is financed from annual membership fees, donations, contributions from the pharmaceutical industry and self-help support from the statutory health insurance companies.
Memberships
The association is a member of NAKOS , the federal self-help group and the Bavarian state self-help group .
Publications
In addition to numerous information brochures, the association has published the GLANDULA magazine every six months with a circulation of 9,000 copies since 1995. It includes articles by health professionals, researchers, and other professionals about pituitary and adrenal diseases and related therapies. In addition, internal information about the association and reports from those affected are published.
The editors are Martin Faßnacht, Marcus Quinkler and Jörg Flitsch. Christian Schulze Kalthoff is responsible for the editing. In 2008 a supplement was published for the first time under the title GLANDUlinchen, which deals with child and adolescent endocrinology.
A forum on the various clinical pictures that is only accessible to members is operated on the association's homepage.
Supraregional pituitary and adrenal day
The association organizes a supraregional pituitary and adrenal day every year . It takes place in different locations in cooperation with a clinic. The three-day event includes series of presentations, workshops and exchanges between those affected.
Web links
Individual evidence
- ^ Website of the network, section "Who we are". (No longer available online.) Archived from the original on February 7, 2017 ; accessed on March 4, 2017 . Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice.
- ^ Website of the network, rubric "Illnesses". Retrieved March 4, 2017 .
- ^ Website of the network, section "Who we are". (No longer available online.) Archived from the original on February 7, 2017 ; accessed on March 4, 2017 . Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice.
- ^ Website of the network, section "Regional groups". Retrieved March 4, 2017 .
- ^ Website of the network, section "Contact". Retrieved March 4, 2017 .
- ^ Website of the network, section "Who we are". (No longer available online.) Archived from the original on February 7, 2017 ; accessed on March 4, 2017 . Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice.
- ^ Website of the network, section "Contact". (No longer available online.) Formerly in the original ; accessed on March 4, 2017 . ( Page no longer available , search in web archives ) Info: The link was automatically marked as defective. Please check the link according to the instructions and then remove this notice.
- ^ Website of the network, section "GLANDULA". Retrieved March 4, 2017 .
- ^ The network's website, "Forum" section. Retrieved March 4, 2017 .
- ^ Website of the network, section "Events". Retrieved March 4, 2017 .
